Round Two in the Fight - North Texas

I was originally diagnosed with breast cancer in Feb 2007 (two different types, stage 1 and stage 0) in my left breast. I had a lumpectomy and radiation. I was coming up on my 5 yr and had just a mammogram in Aug 2011; all clear. However, three weeks later I felt a lump, while showering, in my right breast very close to the surface. To make this part of the story short, I had a lumpectomy Nov 21, 2011, but they couldn't get clear margins and there was more cancer in there than tests indicated (it was in my sentinel lymph node but not the subsequent 18 also removed at the time). I decided to get a double mastectomy which was done Dec 8, 2011. I was not prepared for the pain of this portion of my journey, I will say that! I had my drains in for 6 weeks (coupled with the drain I had in for the Nov surgery which was still in place when I went in for the double mastectomy) which was not a pleasant experience! I elected to do immediate reconstruction with expander placed simultaneously (along with the use of alloderm). I was too thin to take tissue from my stomach and I am a personal trainer and aerobic instructor so didn't want to lose my lat muscles. I came out of surgery with 240cc's in the expanders. As I said it was, for me a very painful experience but I also don't like pain meds/effects so I was off of pain meds 1.5 weeks after my surgery. I had my first fill of 60cc's at 4 weeks (since I still had my drains in it was a strategy to try to force the liquid out and get the drains out). My left side external incision wasn't healing well (Dr. suspected poor blood flow) so on my second fill at 6 weeks was only 60cc's. Dr. said he normally does fills of 120cc but because of my issue with the incision not healing well, he kept it low...thank GOD! My first two fills weren't that bad. There was some pain/pressure but not debilitating. My third fill (60cc)was this past Tues (2.7.12) and oh my gosh...it took me back to the pain levels immediately following my surgery! For me the pain was excruciating; I could barely move, couldn't take deep breaths, (thank God I haven't had to cough very much or sneeze!)it hurt into my back and down my left arm. This intensity lasted for 3 days and even now, day 4 post fill I am still in significant pain. During this time, I broke down and took Tylenol but not prescription pain meds (again, just my own thing). At this point, I am not sure what I am going to do with the reconstruction size. I was originally a full B, small C so my plan was to go to a solid C...I'm not sure I will do that because I don't know how I can get another fill! I am currently at 430cc's. My next one is schedule Feb 23 and my Dr. had mentioned doing 100cc...NOT! From reading some of the posts on here, I am thinking maybe 25cc? And of course, it will take longer than I had originally planned. This is all still pretty fresh for me. I have so appreciated reading everyone's story. When my Dr and Dr's nurse tells me I am the only one that has complained of the level of pain associated with this journey it makes me wonder if I am crazy? Even some of the Dr's posts on here says there shouldn't be pain associated with expanders, and that many don't have alot of pain with the mastectomy. I will add that I have gradually gotten back (before this latest fill) to about 90% of my pre-surgery cardio workout levels and lower body (weights) but definately not my upper body weight lifting. I am still trying to regain my range of motion overhead! It is reassuring to know there are others with similar stories to mine :-). One thing I continually remind myself is all the many positives I have to be thankful for in this journey (ie., I do not have to have chemo) and the love and support of my family. I am also inspired by the stories of so many amazing women on this forum. So while we may never meet face to face, and we all have slightly different stories to share, we can take comfort in sharing our stories and get inspiration from so many strong women!! Thanks to all who have posted on here :-)