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.
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!