Josh is telling me not to worry, that is most likely a big mistake, but how can I NOT worry. When I opened the letter my eyes seemed to scan directly to the words "Bilateral Breast Reconstruction with DIEP.......our physician/peer review have DENIED request." I instantly felt sick to my stomach and my heart start racing. I could hear my voice screaming in my head "This CAN'T be"! Not after all the last eight months of enduring HORRIBLE pain, my body getting through numerous infections, not after FINALLY feeling like the end of this terrible ordeal was possibly in sight.
I know he is probably right. They wouldn't have scheduled my surgery if they hadn't gotten the approval right? I know they had called and told me that they needed me to contact Dr P and have him send them a referral for the actual procedure because they only referral they had was just for the consult. He emailed me and told me that he had sent what they said they needed. UWMC sent me a letter with my upcoming appointments on there, so this HAS to be a mistake.
I will have to go through the weekend TRYING not to worry........sure. :( Lots of prayers and positive thoughts would be appreciated. I really need this to be a mistake.
Again, I am super behind on blogging. Sorry! One of these days I will get caught up with typing out the entries that I have written in my paper journal and it will help fill some of these gaps.
My plastic surgeon basically gave up on my reconstruction. He basically said that it looked like my body was yet again rejecting the tissue expanders and he wasn't sure what else to try. He chose to refer me to the University of Washington Medical Center to hopefully have a procedure done called the DIEP (deep inferior epigastric perforator). The DIEP flap is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound after a mastectomy. This procedure takes its name from the deep inferior epigastric perforator artery in your tummy area and is a form of autologous reconstruction -- a surgery that uses your own tissue. This is a pretty specialized surgery and UWMC is one of the few hospitals in the Northwest that perform this surgery.
There were only a couple surgeons that were recommended to me, one was a male and one was a female. I chose to go with the female surgeon, Dr C, because I felt like she might try a little harder to give me something as normal as possible in the end.....because she is a woman too. I had my initial consultation with my new plastic surgeon on April 27th. I spoke to a resident first. He explained the DIEP surgery in depth and then brought out a binder that had before and after pictures. It's a little different than what I had pictured in my head, but mostly just the scars will be different, and I plan on eventually tattooing over my scars, so it won't matter. At one point he said "After going over your info I can see you have been through ALOT in the past several months. I just want you to know that you are at the right place and are in very capable hands." that was very comforting, for sure. After he went over everything he left the room and then returned with the surgeon. My first impression of her was a good one. She was very sweet and told me that she does the surgery all the time, and not to worry.
The tentative date for the surgery is June 4th. I am scared.....BIG TIME, but I know that the love and support from all my family and friends will carry me through this. The surgery itself will take 4-6 hours and I will be in the hospital for probably 3-5 days. The recovery will be a rough one. Most likely won't be feeling very good for 2-3 weeks and the full recovery will take closer to 4-6 weeks.
I have been through SOOOOO much through this journey and I am hoping and praying that the new surgeon and hospital will be just what I need. I have my pre op appointment on the 22nd so I will have a little more information on exactly what is going to happen.
Please keep me in your thoughts and prayers as I try to prepare myself emotionally for this next phase.
After my surgery last Monday I never really started feeling better. By the end of the week I started hurting really bad on my left side and just felt really crappy. On Thursday night I decided it was time to make a trip to the ER just to make sure everything was ok. They got me right back into a bed and gave me pain medication to help me get comfortable. When the doctor came back to talk to me he said that he was going to call down to Madigan and see what they suggested we do. He came back not to long after with the answer......they wanted to have me transferred down to them because of my history of complications. So that is what happened, I was transfered by ambulance and admitted.
Friday morning the plastic surgery team, minus my doc, came in to talk to me. I guess my doc was on leave so the head of Plastics was the one that came by to see me. That wasn't so bad! They sent me to have an ultrasound done so that they could get a better idea of what was going on inside my left breast. During the ultrasound they found a small pocket of fluid which they decided to aspirate so they could test the fluid. They could also see that the tissue around my expander was all very inflamed.
Lucky me, I have been in the hospital all weekend basically because my doctor wasn't around. They came in today and told me that they have put me on the schedule for Wednesday to take the expander out. I pushed for the surgery because 1) There is no reason for it to be in there because it will have to come out for the DIEP anyways, and 2) I didn't want to risk going home and having to come back in a week or two because things have gotten worse. So Wednesday afternoon I will have my 7th surgery, my 3rd in the last six weeks. Crazy! The good news though is that my body will be free of everything and I can heal and repair for the next several months before my big surgery.
So, thats my update for now!
Surgery went well, I guess. I went to sleep and I woke up.....without a boob! Of course, when he opened me up and took out the expander, the fluid in the pocket was cloudy/murky. They are testing the fluid but he had to assume that there was lingering infection and could not put a new expander in. So, once again I am lopsided and if I thought my right breast looked crazy before it looks even more disturbing now!
I was too groggy after the surgery to carry on a conversation with my surgeon but Josh spoke to him and passed on the information. What he relayed to me was something I wasn't prepared to hear. Basically he said it sounds like Dr. P has kind of thrown up his hands. I guess that he is starting to think that this form of reconstruction is not going to work because it looks like my body is rejecting the expander's. He is suggesting that I go with The DIEP flap (deep inferior epigastric perforator) procedure. The DIEP is a tissue flap procedure that uses fat and skin from your tummy to create a new breast mound after a mastectomy. This procedure takes its name from the deep inferior epigastric perforator artery in your tummy area and is a form of autologous reconstruction -- a surgery that uses your own tissue. The surgery will take about 6-8 hours, will require a probably 5 day hospital stay and will be about a 4-6 week recovery. This is a MUCH bigger surgery than I had ever imagined having to endure during this journey. My doctor will be sending me to University of Washington Medical Center for this surgery. They are among the few places in the Northwest able to offer surgeons with DIEP flap expertise; patients come to the hospital specifically for this procedure. So at least I know that I am going to be in VERY good hands.
Thank you to everyone once again for your continued prayer and support! Love you all!
Yes, you read that right! Over the last week or so I have been experiencing a lot of pain on my right side and the tissue expander feels like it has rotated or something. I can feel a hard edge across the front of my breasts along the incision scar. I have NO clue what is going on under there but when I lay on my back, it seriously looks like an alien boob! I am not joking! This afternoon I was laying on my back watching TV and was feeling around on my breast when I discovered the odd misshaped mess that was going on. LOL
I saw Dr. P on Tuesday and he agreed that it did feel and look a little strange but he didn't really know what could be causing it. He suggested that we do an expansion to see if adding some saline solution into the expander would help the shape normalize. Right after he finished the expansion it did look a little better and I went home hoping that we were on the right road and that the alien boob was just a temporary thing.
Unfortunately the way the hard edge was pushing up against my breast it felt like it had bruised the tissue inside and having the stupid expander moving against it really hurts. I emailed Dr. P and he decided that he will take the right tissue expander out tomorrow morning. He told me that if everything looks pristine when they open me up, he will replace the tissue expander. But, if there is any sign that there is a lingering infection he will not be putting anything else in there. Of course I am frustrated. I don't understand why things are not improving. I just want to start feeling better. :(
I will update you after the surgery, see you on the other side!!!
I have decided to post some progress pictures. I don't want people to HAVE to look at them if they don't want to, so I have made a separate blog to use for pictures and then I can include the link in a post here. That way people can continue to follow my blog without having to look at my breasts the way they are. Doing it that way will also keep this blog G rated. lol
So, here is a link to the first picture. It is from a couple days ago and shows my nippleless scarred breasts, :(
Pictures
Still have quit a bit of pain. I think some of my pain is from over using my arms. I am really bad about adjusting myself in the bed or even on the couch. I push myself up with my hands or elbows too much I think, so that could definitely be playing a part in some of the pain.
I am finding myself getting angry about the loss of my nipples and the length of my scars a lot. I have a feeling that the way my scars look have a lot to do with how upset I feel about my nipples being gone. It's just too shocking of a sight. When I feel myself getting worked up about my nipples I try to remind myself that they are gone, there is NOTHING I can do about it.
Sacrificing my breasts is something that not many people in my life can fully understand. Thinking back about my breasts, my fondest memory I have is of nursing my babies. I was not able to nurse my first born son very long because of lack of knowledge. I thought because he wanted to nurse so often, he must be starving. So I started supplementing with expressed breast milk and formula and at 3 months he refused the breast. There was nothing that was going to get that baby to take my breast. With my next two children was much more educated and breastfeeding was natural from the start. I chose to nurse an extended time with my second and third children. I had done lots of research and was aware that the longer I nursed them past the age of two, the more it would decrease my chances of getting breast cancer.
There is nothing like nursing your baby. Such a special bond to have with your child. I will hold the memories I have of my years of breastfeeding very dear to my heart. They are wonderful, happy, loving memories that nothing can take away, not even the loss of those very breasts. In fact my memories if nursing my children played a big part in me being able to move forward with the mastectomy. I courageously said "I have nursed my children, my breasts have done their job. Knowing my risk, I feel it would be selfish of me to keep my breasts at this point.". More than anything I wanted to be able to live my years, watching my children grow up, marry, and become a grandmother hopefully never having to go through cancer. If keeping my breasts would increase my chances of not being around for part of that, then TAKE THEM!!!!
I did it. I sacrificed my breasts. What has come in the months that have followed.....I could NEVER have prepared myself for that. Recovering from my fourth surgery in almost 5 months, it's exhausting! I hear over and over again, "You are the strongest chick I know!" or "I don't know anyone else so brave". I don't feel that, yet. I appreciate the kind words very much, don't get me wrong, but right now I am in the middle of a painful journey and I like so many days I just want it all to be over because it's "too much". That doesn't feel very strong, or brave.
So I am going to try to get comfortable in bed, and hopefully get some rest. Tomorrow is another day of healing, another day closer to less pain. Goodnight.
