Reconstruction/Revision

I guess I should update about what's been going on lately. After reconstruction I thought I would be so excited to tell you all how wonderful it was to be done. But I didn't feel that way. Then I felt guilty that I didn't feel that way, so I didn't want to talk about it. But here is the story...
I can't even tell you how excited I was for reconstruction. It was scheduled for September 5. I was so excited for surgery, it meant I got the horribly uncomfortable expanders out and implants in, my real fake boobs!! I called the day before and found out I had to be at the hospital at 4:00pm. That is really late considering they wanted me to be NPO (not have anything to eat or drink) starting at midnight the night before. Even starving all day couldn't get me down I was so happy. I figured I would sleep in, but that only lasted until 9. We decided to go to the Temple, it would take up some time and be nice and calming. Ryan woke up earlier than I did and decided he needed a nap... then we hurried and got ready, but there was no way we were making the session, so we went to Costco before trying to make the next session (not the best idea). I happened to be wearing a white skirt that day. When we got in the car to leave the house I looked down and noticed brown on my skirt, which wasn't there before I got in the car. Ryan thought it was makeup, I knew it wasn't because I am not black. I figured whatever, lets just go. Once we left Costco and got in the car again I looked down and more brown all over my skirt! I looked in the car again and found a glob of chocolate on the seat-belt. Seriously! Anyway,so we also missed the next session, of course. Instead we did sealings. It was nice to take my mind of everything and just get to be with Ryan in the Temple, and sealings are my favorite. When we got back to the car I had a bunch of missed calls and messages. Wierd. I really don't get that many phone calls. It was Huntsman trying to get ahold of me to tell me Dr. Agarwal was ahead of schedule and I could come in early. We rushed home, I showered and washed my hair quick since I wouldn't be able to shower for a few days and headed up to Huntsman. We got there about 3, only an hour earlier than my original time, but an hour is an hour, and I was starving, the sooner they could put me out the better! By this time various people had called me about 10 times and they told me they would rush me back. We arrived, got checked in and taken back pretty quickly. Got vitals, did my history, the nurse tried to start an IV but missed :( and we sat. and sat. and sat. Finally one of the anesthesiologists came in and started my IV, and explained what was going to happen, and went on and on about nausea and how they would prevent me from getting nauseous. I tried to tell him I don't typically get nauseous after anesthesia, but he just kept explaining. Fine, I don't want to get nauseous. Then 2 more people came in and talked to me about it! I don't get nauseous!! We got rushed in and I laid in the uncomfortable hospital bed for 3 hours and the only thing you can explain to me is how I could get nauseous!! Just tell me when it's my turn to go back!! That's what I was thinking. One of the anesthesiologists did say that my surgery was scheduled for 7pm. Seriously!! Dr. Agarwal was ahead of schedule when they called me, but the lady before me didn't get there early and then they had trouble getting her IV... so then we got delayed. Dr. Agarwal and one of the residents came in we talked about size. I told them I basically liked the size I was (with the expanders) but maybe a little smaller. That was it they took be back and that is the last thing I remember before I woke up in PACU. Itching like crazy. Once we got back to a room they finally gave me water and juice to drink, I was so thirsty. After 3 glasses they wouldn't let me have anymore because they didn't want me to get nauseous and throw up! Seriously if one more person talks to me about getting nauseous I am going to punch you! I hadn't had anything to eat or drink for almost 24 hours! Good thing I was still a little loopy so I didn't actually yell at the nurse, and we got to go home after that. Outpatient surgery. Crazy. It is funny they were so concerned about nausea and I told them when I wake up I am always super itchy, no one seemed to care about that, and I noticed small scratches all over when I got home.

Recovery was way better than last time! They told me it would be, but I still didn't know what to expect. I didn't have any drains so it really was totally different. I only took pain meds for a couple of days. I got to wear a sweet surgical bra 24/7 (except for showers) for 3 weeks! And even though I felt better I still had to take it easy and limit my activity. That was the hardest part.

Tuesday after surgery I really looked at myself. I hate to say it, but I was disappointed. I thought I would update my blog after surgery and tell you all how great everything was and how happy I am and now everything is done and even though I don't look like I did before it looks pretty good. But that is not how it went. And I have struggled with wanting to write anything because I felt so disappointed and then vain and knew I should just be happy that I don't have cancer anymore and that I am alive, and healthy, and didn't have to do chemo or radiation. I am, I am so happy about all those things. And disappointed in my results. For 3 months I had these uncomfortable expanders in, I went to the hospital almost every week to get expanded. The last 2 expansions were painful enough I had to take my good pain meds for a few days after. I feel like I have been though a lot these last 6 months. Reconstruction was supposed to make me feel almost normal again. The problem is expanders and implants are totally different. They don't compare. I felt like there was a total breakdown of communication (maybe because I am a nurse). They told me how many cc's were in my expanders, 510. I knew the implants wouldn't be quite as "perky" as the expanders were but I really had no idea they would be so different. I'm not saying there is nothing there, because there definitely is. The expanders they put in are 550 cc's. The circumference of them is plenty big, its the "projection" that is lacking. Even Ryan, who by the way was the only one who told me not to go too big, more women told me to go big! But Ryan didn't want me to be too big, even he said they didn't look big enough. If you know Ryan you know he is not one to lie to make you feel better about yourself. I knew if I felt they were too small and he was saying that, then we didn't get the results we wanted. I felt terrible the whole day. Ryan called the Dr. office and told them what was happening and how I was upset. The next day they called me, I figured it would be one of the residents or something like that. No, it was the receptionist. I thought "great, why don't you have someone who can't help me at all call and talk to me!" She listened for a minute and then said Dr. Agarwal could see me on Friday. I was so nervous to talk to Dr. Agarwal and tell him I was not happy with the results he had given me. Ryan was on base and my mom was working so I went by myself. Dr. Agarwal came in with one of the residents and just said "so you're not happy with the results?" I said I wasn't and he said "ok, we can go bigger." Just as simple as that. He explained a little about why they chose that size and that helped me understand a little better. I just wish there would have been more communication before surgery. I didn't know if this was something insurance covered or something I would have to pay for, because if I had to pay for it out of pocket I was just going to have to live with my less than stellar results. Turns out it is a revision and (should) be covered by insurance. I was so relieved I can't even tell you. We scheduled surgery right then for October 13. I have to wait 4 more weeks for things to heal, so we can go cut them open again switch them out and sew me back up, then 3 more weeks of recovery. We talked about doing a 600 and 650 cc implant. Basically Dr. Agarwal will put them both is and see which ones look better and hopefully I will agree when I wake up. I am glad we are able to do a revision, but not excited to have surgery again. I am ready to be done with surgery, done with recovery, and ready to get back to normal life.

Expansion and back to work

I've been meaning to post for awhile now, but can always come up with an excuse! I'm back at work, I went back July 17. It has actually been really good. I was quite nervous to go back-being a new nurse and taking 6 weeks off, I was nervous that I had forgotten everything. My first night back I really got to use my nursing skills. I thought "are you really giving me these patients on my first night back?!" But once I got started I was busy taking care of my patients and didn't have time to worry about what I might forget. Time off is great, but when you aren't able to do much you start to feel worthless. So going back to work for me was good. It was good to feel needed and like I could accomplish things, just nice to do something. So work is going well, good to be back and see friends and catch up with people and get some interaction!

I also started expansion. My first expansion was the end of June, the day before my sisters wedding. I was also nervous for that. I didn't want to be so uncomfortable or in pain for her wedding. The nurse and resident were so nice and reassured me that everything was going to be fine. We started off with only 40mL and they were right I didn't feel bad at all. After that I went in every week to 2 weeks for expansion. I have expansion because they removed all my breast tissue and then put expanders under my pec muscle so they stretch the skin and muscle out until I reach my desired size and get implants. I am not going to lie, the expanders are uncomfortable! You can always feel them, always. This is what the deflated expander looks like:

Looks real comfortable right?? The only thing I can compare it to is wearing a really tight bra all the time. Every week when I go in for expansion they find the port with a magnet, stick the needle in, and insert about 60mL's of saline. My first expansion they did 40 but the rest have been 60mL's. This last expansion we only did 40 again because we are where I want to be size wise. I typically have felt tight after expansion but not really in pain until the last 2. Oh my gosh! The first night I woke up in so much pain, but during the day it wasn't too bad. After that I took a pain pill and muscle relaxer to help me sleep, but was still more uncomfortable than usual. After a few days things seem to get better, then I did it again! I think we are done with expansion now so hopefully no more pain! yay! I don't really have any feeling in my breasts so the injection didn't hurt. I could feel a little poke on the right side and usually just pressure on the left side. My left side was a bleeder though. Which I figured was a good thing because it means I have good blood flow to my breast still and the tissue won't die!

Next I have an appointment with Dr. Agarwal on August 12 to make sure things look good and schedule implant surgery!! I am so excited I can't even explain! The thought of getting these blasted expanders out makes me so very happy!! :) From what I hear this next surgery is a lot easier, I don't think I even stay overnight in the hospital. I just get to wear a sweat surgical bra after for like 3 weeks. As long as they are not as uncomfortable as the expanders I will be fine with anything!

The nurse who has been doing my expansion has been great!! So friendly and nice and reassures me about everything. I am sure I go in with a random question or concern every time and she is always so nice and patient. It is especially nice to have good nurses when you have to sit there with your top off every time you go in and everyone is always looking at your chest! Somewhat awkward but I think I have gotten over that now. I sort of feel like I have disassociated from my "breasts". They really aren't mine anymore, they are more like a medical device cloaked in my skin. Maybe (hopefully) with implants I will feel a little more like myself? For now I have my fake fake boobs! haha. Can't wait to get real fake boobs! Hopefully next update will have a surgery date scheduled.

Recovery, and a sigh of relief!

Recovery has been an interesting road so far. Were just over 2 weeks out, and there have been ups and downs. I was able to go home the day after surgery, honestly I don't remember much about being in the hospital. I remember my family being there and feeling like nobody was talking to my sister Leslie (no idea if that is true) I remember my family left and Ryan stayed late (I let him sleep at home since I was all drugged up and he is much happier when he gets his sleep!) I remember getting up for the first time, I did not feel steady at all. Ryan said I looked so out of it and unstable! But I walked!! I remember the CNA was the nicest hispanic man and he had an accent and sometimes it was hard for me to understand what he was saying. I remember him helping me get up to the bathroom during the night, he would leave the room while I was going and I remember wondering when he was going to come back and how he would know I was ready for him...I remember being so itchy and kept asking for benadryl. I remember walking around the halls twice with Ryan the next day and having salmon for lunch before we left. I know we were changing my pain meds because what they were giving me wasn't working. I probably should have stayed one more night. Oh well, I guess that is what happens when your insurance only ok's a 23 hour observation stay! (seriously!)

Even the first week is a little blurry. I was on a lot of pain meds! I was taking pain meds every three hours and the first night we made the mistake of waiting until I woke up and needed pain meds....we didn't do that again! Alarm set for every 3 hours round the clock. Ryan was the BEST he would get up get me my meds and water, help me sit up, get out of bed and go to the bathroom, and get back into bed. He is the sweetest! If you know Ryan or any Nelson for that matter you know they need their sleep, so for Ryan to get up multiple times during the night and still be so sweet and nice at night and during the day! I love him!!

3 days after surgery when the nurse called to see how I was doing I mentioned that my ankles were swelling. She called back and wanted me to come right in. So back to Huntsman where I was 10 pounds heavier than 3 days before! Yikes!! They said they were concerned because it was so many days after surgery and they expected it right after surgery. Then we talked about my pain meds and how much I was taking and how often, fortunately the surgeons NP came in and switched my pain meds and sent me to the Acute care clinic (ER) at Huntsman. Where I got to explain everything yet again, got an IV and they wanted to give me a liter of fluid! WHAT? Basically I got some pain meds, anti nausea meds because I was feeling so sick, and slept in a hospital bed for 5 hours. Fun night.

Things got better after that! I got one of my drains out the first week which was a little disappointing since I thought I would get one on each side out. Another week with three drains. One more night of nausea. A lot of miralax, water, TV, movies, sleepless nights, awesome husband, family and friends! My exercise has been going to the store with Ryan and straightening up the house both of which seem to wear me out. You would think I would be able to sleep better with benadryl, pain meds and a muscle relaxer, but no. It is really hard to get comfortable laying on your back unable to sleep on your sides with drains coming out of you.

The NP called with pathology results from my breast tissue. No cancer in the left side, nothing in the lymph nodes on the right side, but they found more DCIS in the breast tissue on the right side. She said she didn't think I would need radiation but they may recommend it because of how young I am, but she couldn't give me the final word we had to talk to the surgeon. It's been a stressful week waiting for my appointment with Dr. Neumayer!

Ryan left for his 2 week military training on Sunday the 15th, needless to say the night before I had a little melt down (not the first). Just knowing Ryan was going to be gone, I couldn't drive, Ryan was helping me hold my drains in the shower and washing my hair, I still can't lift my arms above my head or hold anything heavier than a gallon on milk (which all of a sudden seems really heavy). Its hard to not feel or look like yourself. I stayed at my parents for a couple days which was nice, but it is nice to be home too.

Yesterday Tuesday the 17th I saw Dr. Agarwal the plastic surgeon, and got 2 more drains out. That was a good day even though I was a little disappointed that I didn't get them all out. They don't like to take both of the drains on the same side out at the same time. But they told me if the drain still wasn't putting much out I could come back Friday and they will take it out! I can't wait for Friday!! Today I had the much anticipated appointment with Dr. Neumayer. She said everything was looking good and I was recovering well. She said she didn't think I would need radiation adn that I would talk to the radiation oncologist then she looked at my report and saw how far away the DCIS was from the skin (I think) and say I didn't need to talk to the radiation oncologist-I didn't need radiation!! Hallelujah!! I was so relieved.

Now I am just waiting for noon on Friday when I can go back in and get my drain out. Saturday I am going to Vegas for a few day to see Ryan, when I get back it will be lots of wedding stuff for Leslie's wedding on Saturday and Ryan comes home saturday too. I will also start expansion next Friday (I'm a little nervous for that). Thinks are looking good!! :)

Sorry such a long boring post!

Ryan

There are so many people who have helped us along the way from people at work trading shifts, and giving us the time off we need, people bringing us dinner, flowers and treats, stopping by to say hi, and praying and fasting for us. We appreciate you all so very much. There is one person who has been here and supported me from the beginning, Ryan. I honestly don't know what I would do without him! He didn't run when I told him I had the BRCA gene that increased my chances of getting breast cancer to almost 90% He got a job with good insurance so I could get my screening mammograms and MRI's along the way. He held me, listened to me and let me cry when my mammogram showed calcifications, and I had to get a biopsy, and when I found out it was cancer. He has been brave and strong and my source of strength when I didn't have any. He took time off work to go to doctor appointments with me and battle the insurance company. He has prayed with me and for me when I had no words. He told me he loved me and would not leave me, and he has not. He was there when I went into surgery and when I came out of surgery. He makes sure I take all my medications, drink lots of water and that I am comfortable. He gets up in the night to give me my medications and help me get comfortable. He empties my drains several times a day, he even washes my hair! He gave me a priesthood blessing the night before surgery and he is my blessing! Ryan I love you more than I can ever say! Thank you for choosing me and for being by my side through everything! I'm the luckiest girl I know! I love you!

Surgery

It seems like we had to fight tooth and nail to get this surgery done. Insurance has been a battle from the very beginning, even getting Ryan's FMLA paperwork straightened out so he could stay home and take care of me. Everything came down to the last minute. But we made it so surgery day!! I never thought I would be so happy to have this surgery. Sunday nightI received a priesthood blessing, it was nice to be with my family and have the comfort of a priesthood blessing. I felt calm Sunday and Monday morning before surgery. I know I was blessed, I knew this surgery was the right thing, that we had good doctors and that I would be taken care of. Sunday at 1100pm Ryan cooked a stake dinner, I drank about a liter of water and we went to bed. We didn't have to check in at Huntsman until 1130 am so we got to sleep in, shower, get our things together and went to the hospital. After we checked in I had to get a radioactive dye shot in my right breast. we met Dr. Neumayer's NP Victoria Serpico who was awesome! She gave me the shots and explained what would happen with surgery. Then we went to a pre-op room where it seems like we met everyone in the hospital! The CNA came in and got vitals extremely slowly! Because I have the BRCA gene I am participating is a couple different clinical trials they had to get my consent, 2 different anestheologists explained their parts, the nerve block and the sedation, the nurse came in...I really think we may have seen 50 people! I got an IV, drew some labs, got my nerve block and some versed, then we waited for the plastic surgeon to finish his case and wait for the room to be cleaned. I didn't end up going in until after 3:00pm. Surgery went well and apparently quicker than they expected (hopefully that is a good thing?!) I got to the floor about 8:00pm. They had me up and walking that night! I only walked to the next room since I was pretty out of it and dizzy. It was nice to have my family there when I woke up! We tried a couple different pain meds while I was there, my pain seemed to be under control, I was eating and walking so I got to go home Tuesday afternoon. Tuesday night was rough and I wish I would have stayed one more night but wednesday seemed to be good. Wednesday night was again rough and thursday was not a good day. I noticed my ankles were swollen so we called the nurse and they wanted me to come in right away. We left right then and I didn't take anything for nausea or pain, the car ride really pushed me over the edge. We talked to Victoria and the Plastic surgeons PA and they wanted to change my pain meds and go down the the acute care center (like the ER). I got wheeled down to the ACC where we told the whole story again. The docs down there wanted to give me a liter of fluid! Luckily they thought that through and just gave me some zofran and dilaudid and we hung out for 5 hours. Thursday night was much better on new pain meds and a muscle relaxer, I actually slept pretty decent. Today (friday) we went up to the University of Utah to get an ultrasound of my legs, they wanted to be sure I didn't have a blood clot, since the swelling started 3 days after surgery. The ultrasound was clear, my labs came back and all looked good! Very relieving. As long as I take my meds every 3-4 hours I can stay on top of the pain and I feel pretty good. I still get a little dizzy when I change positions and have to be careful about using my arms. I can't even open my pill bottles. I though it would just be nice to have Ryan here, which it is, but I really need him! I am so blessed he was able to get time off, I don't know what I would do without him! For now we are just hanging out (feet up) until the doctor appointment on Tuesday when I will hopefully get one drain out on each side. I have 2 drains on each side, hopefully 2 will come out next week and the other 2 the week after! That will be glorious!

Insurance, the only thing more stressful than cancer!

Dealing with insurance has been a nightmare throughout this whole cancer ordeal. I worked last Sunday and Monday night, when I got up Tuesday afternon I called to insurance to make sure everything was good, since my surgery was next week. When I called the, the "wonderfully helpfull" woman on the other side said they were still processing the claim. It had been about 3 weeks, it should already have been processed. I had to wait 20 minutes for them to process and scan the claim. She called me back and said my whole surgery had been denied!! Needless to say I was livid! Trying to stay calm I found out the denied the right side because they didn't read that I had cancer! They denied the left side because they don't do prophylactic mastectomies! Naturally I started bawling. I called Huntsman right away and they were blown away that I got denied! And I could't get ahold of Ryan becasue he was at work. It was so stressful. Ryan took Wednesday and Thursday off so we could figure out what to do. Huntsman called the insureance, Ryan called lawyers and his union rep. Oiginally the insurance company told us we could appeal the denial and when the board met again for the quarter they would discuss it, but they didn't meed again until June 10 and my surgery was already scheduled for June 2. After 2 very long stressful days, our case was voted on my the union reps through an emergency email meeting! Yes they just emailed the board members. We were supposed to find out Thursday what their decision was but they didn't call us back until Friday morning. Finally approving my bilateral mastectomy. A very smart move on their part! Our nurse coordinator at Huntsman, Jill was truly amazing! She called our insurance several times, faxed Ryan's FMLA paperwork at least 4 times. Her advice if they denied m claim again was to call Get Gephardt and let him investigate this crappy insurance company! When the insurance called me on Friday morning they told me the claim had been approved and they were even approving reconstruction! Seriously, they had to cover the recontruction, but they were trying to make it sound like they were being so gracious! I didn't even bring up the fact that only part of the reconstruction was being done on June 2nd, and that in 3 months I will get the implants! Someone was definatley looking out for us, we have had so many prayers on our behalf and I believe that really helped.

Finally moving forward (again)

I haven't been very good at staying up-to-date on my blog. I have found it is actually harder than I though for me to write about all of this. If you know me, you know i'm not one to share a lot of personal thought and feelings freely with people, so blogging about having cancer and what we are going through has not been easy, but maybe a little therapeutic. I have found that I think I am handling things pretty well and then I blog about them and the emotions come right back to the surface. I am not a writer, writing has never been my strong suit or fun for me, so thanks for bearing with me and reading my poorly written blog. Anyway, things are moving forward again. Last week we met with our new plastic surgeon at Huntsman, on the day I was supposed to originally have surgery, so it was a little depressing. First we met with the resident who seemed very nice, but she mentioned that there was a high probability I might need radiation. WHAT??? Needless to say that freaked both Ryan and I out. The plastic surgeon was not very talkative, seemed fine enough but didn't really explain or put our fears at ease about the radiation. We have talked to several doctors, we knew that if they found more cancer or it looked like it was spreading or what not I may need radiation, but all our other doctors felt it was unlikely I would need radiation, especially since I had very early stage DCIS which has not spread. So we were floored when the resident mentioned several times that radiation was a possibility and that she had told people before they wouldn't need radiation and then they did end up needing it. I totally understand covering your bases, but I wondered if they had even looked at my images and history. After that appointment we actually signed up for secondary insurance through the reserves so that if we didn't like the general surgeon we could go back to IHC and have some of our out of pocket covered by the secondary insurance. Which still wasn't ideal because we don't really know what our insurance would pay for an out of network surgery and have no idea what the secondary would cover. We were hoping and praying the general surgeon would calm our fears. Yesterday (wednesday) we met with the general surgeon at Huntsman. It started out a little shaky when they wanted to me come in 30-60 min early to enter all my information because they got a new charting system and the receptionist wasn't exactly friendly, and ended up saying half and hour early should be fine. So we showed up half hour early and the lady at the front desk said I needed a mammogram. Ryan was ready to leave right there. I told her I didn't need a mammogram I had already had several mammograms and I am already diagnosed with breast cancer. My medical records had been sent over and they could read my previous mammogram. She went back to talk to someone and didn't say anything more about it. I told Ryan we were here and just going to see the Dr. So we waited. Again we saw the resident first who was very nice and listened to our fears about radiation and said she would let Dr. Neumayer know. Dr. Neumayer came in and talked to us, she was very nice. Even said she didn't think that I would need radiation and that they had one of my early MRI's and could see that the spot in the left breast that was concerning in my newest MRI hadn't changed so they didn't need to do sentinel lymph nodes on the left side. That was relieving. I was afraid that because we were at a cancer hospital they were going to be extreme and take more than they needed and radiate "just to be safe". She was very calming. We talked about incision sites and total skin sparing. She told us she wouldn't be offended if we went back to IHC (she actually trained all the surgeons we had seen at IHC!). But we felt comfortable and confident enough with her that we are staying at Huntsman and we scheduled surgery for June 2. I feel so relieved! I am glad we don't have to wait another month for surgery, that we can get it done early so I can be recovered for Leslie's wedding. Relieved that we found good doctors. Relieved that it will be covered by our insurance and now we also have secondary insurance. I am so blessed to have Ryan by my side through all of this, he has truly been a strength to me. I am blessed to have such wonderful family who love and support us! My mother who understands what I am going through and listens to me and still loves me, my mother-in-law who sends me beautiful flowers to brighten my day just when I need it. A wonderful sister-in-law who has set up a Facebook page and fundraising for us. We have so many people who care and are praying for us. We couldn't do it without all of you! Thank you so very much for your continued support. I have received messages on Facebook from people asking what they can do for us, and just letting us know we are in their prayers. I cannot adequately express how much this means to us, and I thank you for wanting to help. Honesty right now we are just getting things in order, I am still healthy and working. Ryan will be able to take some time off work to be home with me after surgery, so I don't know yet what we will need. But thank you all for offering. I will do my best to ask for help when we do need it. For now your prayers and support and so greatly appreciated!