I realize that a lot of people don't actually know what is going on. Here's what's been happening since I last wrote.
December2, 2014:
I met with Dr. Agarwal and an oncologist who will be following me now, for my 6 month follow up (post-mastectomy) and both gave me the all clear. Things looked good and I didn't need to come back until June 2015 for my 1 year follow up!! yay!! I was back at work getting ready for the holidays and enjoying being "normal" again. Things were good. Or so we thought...
Mid February 2015:
I am at work on a Thursday night and I have been freezing! I usually get cold at night, but not like this. I sat there and thought, oh, my left breast is kind of hurting me. Ryan made me do push-ups yesterday, maybe that is why I'm sore? Then I thought it was weird that only my left breast was bothering me. I felt it and noticed that it was swollen. Thinking back on my week at work I realized that I had been freezing every night=chills, I was starting to feel sick. I went into the bathroom and took off my scrub top to assess the situation. Yep, left breast was swollen and red. I had my capstone student with me and didn't want to panic. When I got home from work I told Ryan and he agreed that I needed to call Huntsman. They of course wanted me to come in immediately! See the Dr. and we decide to start oral antibiotics for 2 weeks. After a few days I am feeling better and near the end of the 2 weeks the swelling is also going down. I follow up at Huntsman and we all agree it looks like I am back to baseline. We celebrated our 8 year anniversary. 5 days after my last antibiotic we were watching TV it was like 9:00 at night, Ryan was dozing and I realized again that I didn't feel good. Panic. I had to work the next night and tried to suck it up, I was in denial that the infection could be back. I didn't tell Ryan all day that I wasn't feeling good. I didn't want him to worry. Finally as I am walking out the door Ryan asks if I am ok and I loose it. I start bawling! I told him I wasn't feeling good again and that the infection was probably back. I went to work that night it was a Friday night and it was terrible! I felt awful and nothing seemed to help. Previously some Tylenol or Ibuprofen helped me feel functional, but that night seemed to drag on forever! It was Ryan's military weekend so he was up at Hill AFB and I was scheduled to work Saturday night as well. When I woke up that afternoon I still felt sick, but not as bad as I had the night before so I laid there and debated whether or not to work or call in sick. I knew I could not handle another night like the last one. I called Ryan who miraculously answered and instantly started crying to him about my dilemma. He told me to just call in sick, so I did. There was not much I could do that weekend except lay around and be miserable. My temp was a steady 100 the whole weekend. Finally Monday morning came and I called Huntsman AGAIN! We went in and talked about options. We could do the same antibiotic again for a longer course, but it didn't work last time so why would it work again? I could get a PICC line and do IV antibiotics, is it time for the implant to come out and start all over?? Then Joanna mentioned a drug they don't use very often that would be oral and was supposedly as strong as Vancomycin. We decided to think about it and she would look into the drug and I would come back in the next day. Came back Tuesday and talked about all the options. We got a prescription for the bactrum which I had just finished and the new drug Zyvox. Zyvox is not used very often (at least there) because it is crazy expensive!! Like CRAZY! As in it was still very expensive even after insurance and a $1000 coupon! But we got a second opinion and decided it was our best bet before surgery and it would allow me to keep working. Started 2 weeks of Zyvox. Started feeling good, swelling started going down. The last Thursday on the pill I felt like things were looking good, back to normal. I worked Thursday night and was doing good! Yay! Friday afternoon when I woke up I as sick and swollen. How is this even possible??? I toke my last pill that morning!! I was dumbfounded! I had been on antibiotics for nearly 4 weeks and nothing was working!
Monday March 16:
Back to Huntsman. This time we are talking not only PICC line, and drain, but surgery. We decided to try washing out the cavity the implant was sitting in with an antibiotic wash and starting IV antibiotics. I was put on the surgery schedule for Wednesday. I also set up an appointment with and Infections Disease Dr at LDS Hospital for Tuesday.I had also pick up the prescription for bactrum the Dr. had written last time and started taking it on Saturday which is why by Monday I was feeling better.
Tuesday March 17:
We meet with Dr. Tettelbach. He hears my story and thinks that maybe an extended course of bactrum will work. At this point I am willing to try anything. He also wants me to get an ultrasound of the left breast to make sure there is fluid in there and not fluid in the tissue (cellulitis) because putting in a drain won't do any good if the fluid is in the tissue. Ok. We felt good about the plan. We went to schedule the ultrasound and could not get in anywhere in IHC before April 1st! Grrr..so I called the PA at Huntsman and told her what he thought and about the ultrasound. She said she would make some calls and would call me back. Ryan and I were eating lunch in Sugarhouse when she called and told me if I could get there is 15 minutes I could get the ultrasound done that day! So I dropped everything and booked it up to Huntsman. Needless to say they found fluid around the implant. So I was still on for Surgery the next day.
Wednesday March 18:
We have been through this routine several times by now. Ryan had a lab that day that he needed to go to so my sweet sister Leslie came with me to the hospital. I told the Dr. that Leslie has the gene and all this is freaking her out! The dr. hopefully reassured her that this is very unusual and not typical after a mastectomy and reconstruction. Surgery went well. It turns out they actually took the implant out, washed it, washed me out, and put in a drain. I was somehow under the impression that they were going to keep the implant in and wash me out and put a drain in....I thought if they took the implant out they would put a spacer in and we would be starting back at 0. Seemed ok, except that if we were going to take the implant out and wash it I think we should have just put a whole new one in!! We have already done this. In October we did this exact same thing and it didn't work! I hope it works this time. I stayed overnight to get a PICC line placed the next morning and they started antibiotics on me. This time we are doing Rocephin and Vanco. At 9:00 am the PICC team came to put the line in but they couldn't get it past midline. Getting a PICC line placed in not very comfortable it's not necessarily painful, but definitely not comfortable, and having them keep trying to advance it was not fun. At one point he flushed it and I could feel it in my neck-not the right spot! So I was going to have to get it placed in IR (interventional radiology)so they could see what they were doing. They don't know exactly when I will go down and don't want me to eat anything incase they have to sedate me. So Ryan and I hung out at the hospital all day. Even though I looked plenty scary it was nice to have a visit from a friend! Christina came by after her shift and brought a treat and flowers, which totally made my day! Thanks Christina! Just before 5 they came to get me. Like usual they told me the risks and also told me that if they couldn't advance it they could have to place it in my neck! Anxiety just shot through the roof! Now I want to be sedated!! I don't want to hear that! I'm the patient that if it could go wrong it will go wrong! Happily they were able to advance it and I was out of there! sigh of relief! I was finally discharged at 7:00 pm. Long day in the hospital.
So now I have my drain which we will keep until nearly nothing is coming out! I am hoping that will be this Friday (the 27) I have an appointment in the morning. I have a PICC line which I am doing Rocephin and Vancomycin in twice a day. The Rocephin only take 5 min for me to push in and the vanco is infused by a pressure ball (like last time) over 2 hours. The plan right now is to do that for 2 weeks but depending on my labs they may do it longer. They have increased my dose of vanco twice already and I am planning on them wanting to do IV antibiotics for longer than 2 weeks. It sucks but I would rather keep doing it now while I already have the PICC line. After the IV antibiotics we will start an extended course of oral antibiotics for 3-6 months! Wow. 2015 was supposed to be a new year, so far it is just a continuation of everything that happened last year. I am ready to be done. Ryan has been amazing! Seriously holding me together! I don't know what I would do without him. He comes to all my appointments, helps me get all covered up to take a shower, makes breakfast, doesn't complain too much when all I do is lay around on the couch watching musicals! He could not be any sweeter and I am incredibly blessed to have him in my life, unfortunately he may not be so lucky to have me! Last night he lovingly encouraged me to apply for the nurse practitioner program. His plan, I'm a nurse practitioner and he works part time. I said with my history do you really think you can rely on me to be the bread winner! Ha! It was kind of funny.
So that's my saga. Sorry so long!
Wednesday, March 25, 2015
Monday, October 20, 2014
2nd revision
Monday the 13th of October I went in for my second revision. Again they called to tell me Dr. Agarwal was ahead of schedule and they would rush me back. This time they actually did a pretty good job, until the anesthesiology resident came in to start my IV. Dang IV's always seem to mess me up! He tried twice and missed. A little bit later the attending came in and tried, he got the second one, but it seemed sketchy to me...so they tried 4 IV's in my hand. :( In case your wondering I don't recommend getting the lidocaine shot before the IV it just messes things up! Once we got that started they got me back! Surgery was pretty short I guess. You would think it would be since they were just switching some implants out. According to Ryan I took a little longer in recovery, but then we got to go home. I figured I might be a little more sore since they put a bigger size in but that basically recovery would be as good as last time. I was wrong. This last week was pretty miserable and crappy! I just didn't feel great for a few days then Friday I thought I might be over it, I actually put on makeup and we went out to dinner! Early Saturday morning I woke up really not feeling well. Diarrhea and vomiting. I can't remember the last time I threw up. It was horrible. Sunday I felt weak but better. I got showered while Ryan was at church, when he came home I was sick again and freezing on the couch with a heated blanket! All this time I had noticed some redness on my left breast and it was a little warmer than the right and a little bigger, I knew it was signs of infection but I was on antibiotics so I figured I would watch it for a few days. After being so sick Saturday I finally called the on call resident on Sunday. He basically told me if it got worse that night to go to the ER, if not get in to see Dr. Agarwal on Monday. About as helpful as you would expect an on call resident to be. I called this morning and they were full but said they would fit me in. We waited at least an hour before the PA finally saw us (I do actually like her). Once we were in the room and I took my shirt off to put on my gown I noticed some leakage. Over the hour we waited in the room it leaked a lot from the incision site. Gross. Leaking pus, I know I am a nurse but seriously that is disgusting! The PA decided to switch my antibiotic since it obviously wasn't working! and went over the options with us. If in 72 hours that antibiotic didn't seem to be working we could possibly have to put a PICC line in and do IV vanco. If that didn't work (worst case scenario) they would have to take the implant out clean out the space and wait for it to heal before redoing it. She also wanted Dr. Agarwal to come look at it, he was is surgery today but fortunately was in between cases and was able to come right over. He agreed to switch the antibiotic, then we talked about putting a drain in. The dreaded drain! We decided that would be the best thing to do right now. So tomorrow I get to go back to the OR where they will put in a drain, see who things look, get some cultures and if they think it would be a good idea place a PICC line. yeah. I guess if I would have just taken what I got the first time this wouldn't have happened!
So now it makes sense why I have had such a crappy week. I go in tomorrow at 1:30. And they want me to stay overnight. I guess I will let you know if I get a PICC line and 10 days of vanco! Today is the first day in a week I have felt remotely good and then tomorrow it will all change again. At least its a beautiful day! You start to think a lot about why all this is happening. Is it because I was vain and didn't like my first results? Is it because I didn't really have cancer, just DCIS and this is payback? I know it just happened. I don't know why. I know it will all be over soon, but sometimes it seems like it might not. I just want to go to work and take care of my sick babies and not be a sick patient anymore! I am like the what they tell you could possibly happen when you go in for surgery. They have to tell you all those things just in case. But it actually happened to me. dang.
So now it makes sense why I have had such a crappy week. I go in tomorrow at 1:30. And they want me to stay overnight. I guess I will let you know if I get a PICC line and 10 days of vanco! Today is the first day in a week I have felt remotely good and then tomorrow it will all change again. At least its a beautiful day! You start to think a lot about why all this is happening. Is it because I was vain and didn't like my first results? Is it because I didn't really have cancer, just DCIS and this is payback? I know it just happened. I don't know why. I know it will all be over soon, but sometimes it seems like it might not. I just want to go to work and take care of my sick babies and not be a sick patient anymore! I am like the what they tell you could possibly happen when you go in for surgery. They have to tell you all those things just in case. But it actually happened to me. dang.
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.
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.
Thursday, August 7, 2014
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.
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.
Wednesday, June 18, 2014
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!
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!
Sunday, June 8, 2014
Ryan
Friday, June 6, 2014
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!
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