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.