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!

Frustrated

I have been meaning to post for awhile, but I haven't been able to bring myself to actually do it. Every time I think about it I get so frustrated. Things were going great (considering the circumstances). Dr. Reading was great she was coordinating with Dr. Ferguson for a surgery date. I was happy with my Doctors and we found out surgery was scheduled for May 6. I liked that, I was ready to get things done. I found out on Monday the 21st of April about surgery, we also got some insurance papers in the mail. Turns out UPS updated their contracts and switched insurance providers. We knew the contract was coming up so when we found out about the cancer in March Ryan tried calling to see what was going on, he told them about the cancer and tried to explain that we didn't want to be in the middle of everything and find out our insurance had switched. Basically he got the run around and no one could give him any answers, Until April 21 when we found out that as of April 1st our insurance had switched! Instead of IHC being a provider the U of U was the big provider, IHC is not even contracted, which is where ALL my doctors are! I as so upset. The stupid third party insurance ladies we get to talk to are rude and not helpful at all. Basically they can recite what the insurance book says, which I already read. They told me I "could go anywhere I wanted" DUH. Of course I can go anywhere I want, it doesn't mean they will pay for it! I don't think she understands how insurance works. "We will pay 100% of reasonable and customary" She told me, which doesn't help because I would be responsible for the difference! I can't even imagine what the difference would be on that surgery and reconstruction! I wanted to reach through the phone and punch her in the face! I also hoped all the houses of the high ups and UPS would burn! I am so happy their wallets are getting bigger because they can screw their employees by getting a ghetto insurance plan and letting them know about it in the middle of the month!! You can probably tell I am still a little upset about it. It is not that I can't go see good doctors still. We can now go to the Huntsman Cancer Institute, which is good. But it is so frustrating when you have been referred to good doctors, feel comfortable with them and have surgery scheduled in 2 weeks. Now I have an appointment with a plastic surgeon at Huntsman on the day I was supposed to be having surgery, and I can't even get in to see the surgeon until the 14th of May, which means surgery won't be until the end of May (earliest) to beginning of June! We are staring over. I am sorry this is a depressing post.I just can't even tell you how upset, mad, and defeated I have felt. I have been trying to have a positive attitude about this, not easy, people tell me what a good attitude I have, and I feel like I am lying to everyone! I am feeling a little better. I know Huntsman will be a good place to be, I am nervous about meeting new doctors and waiting another month for surgery. Waiting weighs on you, it consumes your thoughts, it steals my days off, it adds tension. My sisters wedding is the end of June. I want to throw her a bridal shower, but when? What if I schedule it and then end up having surgery? If I wait I will still be recovering. I was hoping to feel pretty good at her wedding, I don't want to have drains coming out my sides! I know it is a silly thing to worry about but I do. She is my only sister and I want to be able to do all the things a sister should do. I know she won't be mad and I know she understands, but I don't know if I do. So thats the latest drama in my life. Technically nothing is really happening. Just waiting. Sorry this is such a depressing post. Maybe I will post a happy story next time. Thank you all again for your love and support, you really do make a difference and help me get through the rough days!

Busy week

Its been a busy week! Monday and Tuesday were my last 2 days of school, I am finally done, even though graduation isn't until the 25. I am so grateful everything happened when it did and I was able to finish my last semester. I can't imagine what I would do if I was this close and wasn't able to finish. Tender mercy. Monday during class, well my teacher left a 8:30 and our second class wasn't until 12...my surgeon called twice. The first time she was wondering what I had decided and we talked about options. The second phone call was the stressful one. She wanted me to get an ultrasound. If you remember my MRI showed spots in both breasts. When they do the right mastectomy they will take the sentinel nodes to make sure no cancer has spread, we had talked about that at the clinic. So she wanted to me get an ultrasound of the left breast to check out the concerning spot on that side to see what we needed to do. So then I got the ultrasound scheduled for Thursday. Just thinking about all that and school and work was very overwhelming. Not to mention the surgeon who called is the surgeon we aren't thrilled to work with, but we hadn't had the appointment with the new surgeon yet, we did Thursday afternoon. 8:30 am, too early for me, I went and had a breast ultrasound. I think I was stressed because it seems like every time I go in for a procedure they find some other spot they want to check out. The though of having more cancer spots is really scary. Because I don't want to deal with waiting for the next spot to show up, which inevitable it will, I decided to do the double mastectomy. Back to the ultrasound. The ultrasound tech could not find the spots they found in the MRI in either breast so the radiologist came in and tried and he couldn't find them either. Really there was just one spot on the left side that was really concerning to them. If they had been able to see the spot they would have biopsied it, since they couldn't he recommended talking to my doctor to see what we should do. Either not worry about it since I am doing a mastectomy, or do a MRI guided biopsy, that sounded terrible. If you have ever had a MRI you know how uncomfortable they are, now imagine one lying on your stomach while they do a biopsy! Only 1 1/2-2 hours! I really didn't want to do that. Later Thursday afternoon we had an appointment with a new surgeon. She was wonderful!! I was happy and Ryan was happy! She answered all our questions, she was nice and could talk to us. So relieving, I felt like a weight had been lifted off my shoulders. She said I didn't need to the the biopsy, we would just do the mastectomy and take the sentinel nodes on both sides. I am fine with that. So after a few stressful days worrying why they all of the sudden wanted me to get an ultrasound and biopsy and wondering if there was something they weren't telling me, I finally felt relieved. The decision has been made, I feel comfortable and confident with both my surgeon and plastic surgeon, considering the circumstances I am happy. So there it is. I am getting a double mastectomy at 29. Even though I feel like it is the right decision it is scary! Now we are just waiting for the surgeon and plastic surgeon to coordinate their schedules and let me know when the big day is. Sorry that is a lot of explaining. But that is what is going on in my crazy life! So I was thinking with all these doctors appointments and a hospital stay coming up maybe I should get my own hospital gown, one size does not fit all!