I am finally back home! First I want to say that the Center for Restorative Breast Surgery, affectionately known as the Center, is AMAZING! All of my care was top notch, and I felt I couldn't of been in better hands. I really did have some high expectations for the Center, since everyone I know that went there was hyping it up, and plus their patient surgical pictures really were impressive. From the day that I arrived the Center exceeded all of my expectations and really showed me what top notch medical care is like.
The Center is actually an unknown by many people, but in the breast cancer world they are the rock stars, quoting a lady I met there. These people are devoted to making your experience the best since day of diagnosis. Women travel from all over the U.S. and even internationally to have reconstruction at the Center. Due to such a patient population, the Center determines you're a candidate by email. Yes, I did send them pictures of me in the buff, but my head was cut out from it. I qualified and then the insurance dance began. It finally was approved and from there I scheduled my first surgery, Stage I. I booked my own flights and hotel, but the Center covers transportation. Every time I had a question, I could call the center and talk to someone (no recordings!) and they were always helpful. Plus they have a sweet southern accent that just makes you feel welcome at 'hello'.
Reconstructive surgery cannot be performed unless you're at least six months out from chemo and four months out from radiation. My last day of radiation was November 13th, so thus my surgery date was March 13th. This also happens to be six months minus one day from the end of my chemo. My surgery prep involved quitting vitamin E supplements--not entirely sure why on that one. I also had to stop taking blood thinners three days before surgery, which I was on for my port. As per advice of my radiation oncologist, treat the radiation site with cocoa butter to keep it soft for reconstruction. Although I did start having doubts, not as whether I should do the procedure, but whether I was doing enough. Prophylactic mastectomy was what was on my mind. To do the surgery or not to do it. If I had a genetic mutation, it would be a must, as the chances of cancer in it would be about 60-80% or more. Yet, for the last two testings I came back negative for mutations. So, I called my oncologist to see what he would say. He reminded me that this is a very personal decision, but I told him I'm on the fence about it and asked him what he would recommend. He said there is no rush for it while I'm on tamoxifen, since that drug kills breast cancer. Although my chances after I end the drug jump to about being twice the risk of the average person (which is about 24%). He said he himself would never have to make that decision, but if his daughter had this situation he would recommend the surgery--but he also told me he is an overbearing father. Nothing like me to wait to the last minute to throw a wrench into things! I then called the Center to see what they would say. One of the nurses told me that she would call the head doctor guy at Myriad Genetics, the only place that does the breast cancer gene genetic testing, and see what he would say. (Another reason why I love the Center!) So the nurse got back with me and told me that the doctor said even though the genetic tests came back negative, and he also thought that the Li Fraumeni would come back negative too, due to my age and history he would in his professional opinion recommend prophylactic action. I decided to do it then. Although, my surgery was scheduled for only a unilateral reconstruction, and they couldn't fit me in for a bilateral surgery until March. I then called Doug and asked him what he thought. He said to wait on the prophylaxis. So I kept the surgery date. Doug reminded me of how I don't need the surgery now and that I always wanted to breast feed our kids. Which is true.
What really jumped me into action about reconsidering all of this is my Godmother was diagnosed with breast cancer that same week and had surgery the Friday before I was to fly out. She is a close friend of the family and has always been like an aunt to me. Her diagnosis floored me. It is actually easier to take bad news about yourself, because you are in charge of handling it and dealing with it. Yet, when my godmother told us the news, a part of me was pained in a way I had never felt before. I felt helpless and lost; and the worst part was you're reminded of how it felt to be diagnosed yourself--and suddenly all the emotions you boxed away into memory flood back with full force. I hoped and prayed for a low stage and only surgery needed, but unfortunately it had spread to two of her lymph nodes. She will be having chemotherapy because of this. My Godmother told me it was funny that I came to her wedding this past summer wearing a scarf, and it looks like she'll be attending mine wearing a scarf herself! She has handled all of this with grace and poise, I really do admire her. Her own mother was diagnosed several years ago and so she expected it. My mom said it was different to sit with me, my Godmother and her mother, as all three had had breast cancer. My mom and I saw my Godmother off before her surgery; I want to help her so much. I had wished to give my hatbox (full of my scarves and hats) away to someone who needed it, maybe I wished too hard.
Well, needless to say I felt like I was being diagnosed again and just wanted to take action. I will be having prophylactic surgery, but I'll be doing it after I have kids. I figure this decision allows me to always change my mind (God forbid!) and I will be able to utilize it while I can, so to speak.
Back to the trip. My mom and I flew out to NOLa on Sunday March 11th. We landed late in MSY, but we were greeted well by the limo company that the center uses for transportation. It was a nice little touch to ride around in a Lincoln Town Car. We arrived at the "
W" hotel, very modern and chic I might add. (thanks Dad) It was then that the nurse I spoke with on Friday called me on my cell and told me that she told the situation to my doctor, Dr. Sullivan, and he said he would accommodate a bilateral on Tuesday if I wished. I told her how I thought it over and did decide to wait on the other side, but I really appreciated their offer!
That night my mom and I gambled a bit at Harrah's right across the street. I enjoyed both a virgin and non-virgin strawberry daiquiri, which by the way the virgin tasted way better. Alcohol and I aren't good friends as I went to bed with a nice stomachache, but oh did I enjoy the nice plush bed that the "W" is known for!
The next day my mom and I walked to the French Quarter and visited the famous
Cafe du Monde and enjoyed beignets and coffee. We then hustled back to the hotel and caught a stretch limo this time to my first appointment, hospital registration at
Omega in Metairie, Louisiana. Upon reaching Omega you notice the first few floors are just parking structure, the hospital is actually not that large, and it is only a few floors. Inside it is absolutely beautiful with great big lush chairs in the waiting areas and very modern amenities. No hospital feel whatsoever! I registered on the fourth floor, and they told me that I would be on the fifth floor tomorrow for recovery, which they said is very nice. It is a 15 bed hospital, but is owned by a group of doctors. As I was registering at the front desk a lady nearby was filling out information also. Turns out she was a lady from the Young Survival Coalition boards I post on! She was there for her Stage II surgery and said that Drs. Sullivan and Dellacroce were like the rock stars of breast cancer--I couldn't of agreed with her more! Registration took forever, but was just a confirmation of my tests and a urine sample. Then we took the limo to the Center.
The Center is a nice building from the outside. Looked like a regular Louisiana professional building, but there is no sign on the outside. We pulled around the back and walked in. Inside the lobby area the ceiling goes up the full two stories and is so beautiful! There is a waterfall structure on the wall, light streaming in from above, beautiful paintings, fresh roses in all the vases, and very cushy chairs to sit in. I first greeted a security guard at the first desk, who then directed me to a second desk off to the back right. There I got to start meeting some of the ladies I spoke on the phone so often with. They led me to a private waiting room with refreshments. All the colors were so calming and peaceful, one of the nurses told my mom that they hired a decorator who would specifically make the place peaceful and tranquil in color and design. It really did not feel like a doctor's office at all! I was so nervous and anxious at this moment. I had spent a lot of time and money to get to this point, and I had never even met the doctor yet! In a short while I was called back to a conference room fit with a nice table and plasma TV. Shortly after
Dr. Sullivan came in, dressed in navy blue scrubs. He spoke in a very comforting southern accent and proceeded to tell me about how the SGAP is performed. Dr. Sullivan said that the best place to take the fat from is the 'love handle' area, but unfortunately it cannot be done because of the lack of large vessels in the area. That is why the buttock region is nice because of the larger vessels there. He drew pictures, and he draws quite well I might add, and explained where the tissue flap comes from exactly. He then mentioned a new procedure, which happens to be a mix between an SGAP and an IGAP. This procedure would involve a flap that runs more north and south verses east and west, and it would be along the thigh. He said it maintains the contour of the buttocks, which is sacrificed in the SGAP and hard to fix aesthetically. The only downfall of the new procedure is a scar that would be visible in more revealing underwear and bathing suits. He said he had performed this procedure on four ladies before me. The lady he started this on actually suggested the procedure because she didn't want to lose her shape with the surgery because her husband really liked her butt. I thought that was quite funny :)
Then I was sent to an examination room where I put on a gown and some medical underwear. One of the nurses came in and led me to a room just for photographing. It was set up like a photography studio with a backdrop, lighting and professional digital camera and computer nearby. I shed my gown and posed for many photographs. They even had a little space heater to make it a bit more comfortable. The nurse explained that this is the dreaded part, but it was also essential as the pictures are used during surgery. The body changes shape as we lay down, as on the surgical table, so how things look relative to the rest of the body matter when standing. Then I returned to the examination room where Dr. Sullivan returned and started drawing on me possible surgical sites in blue permanent marker. He drew out the SGAP and the new procedure he suggested, and told me I don't need to make a decision until the next morning. They had me lay on my stomach and they placed a dopplar on the buttock region and mapped out my perforator vessels, which he commented where good ones. I think I have running to thank for that, as I have quite large veins all over my body. I asked him if he would take out my port, and he would :) I also asked if I could keep it and I could. Then I was pretty much done and just needed to do insurance copays. It was so nice to meet everyone that I spoke on the phone with, and they all really are so great! One of the nurses showed me pictures of the SGAP and pictures of the new procedure on a patient. It gave me a good idea of what to expect and I decided for sure on the new procedure after that.
My mom and I had the rest of the evening after that, which we enjoyed with a buggy tour of the French Quarter and some local food. I went to bed early as I was getting anxious and nervous about the whole thing. I also had to check in the hospital at 5:00 am, so my ride was getting there at 4:30 am. Omega has guest beds in each of the patients' rooms, so my mom checked out of the hotel with me that next morning, since we figured she could go out and shop around Metairie and not worry about taxi cabs.
Our chauffeur arrived earlier than 4:30 am and so we left the hotel a little earlier. Omega was about 20 minutes away so I was real early. The driver deals with the Center often, so he had us buzzed into the building and then accompanied us up the elevator to the fifth floor. There my vitals were collected and I was shown to my room. Nothing prepared me for the room! It was carpeted, painted in warm colors and large. A cherry entertainment system on one wall housed a
Murphy bed, TV, microwave and refrigerator! The patient bed even had a cherry headboard and foot board. The bathroom had a nice glass corner shower and tiled floors. It was practically better than the hotel! We were also told that there is no cafeteria in the hospital and that all food is catered in! The fridge was also stocked with water, pop and juice, and there were snacks on the counter too.
Every nurse I met was sooooo nice! They really treated you well there. My surgery was scheduled for 7 am, so sometime before it I was taken to the pre-op area, which looked like a hospital this time! But anyways, I was donned in the wonderful gown and had my IV started. I met a couple nurses and my anesthesiologist, who gave me a shot to calm me, and I really don't remember anything after that! Next thing I knew I was waking up in my room with a pair of breasts! My mom said I kept repeating over and over that it didn't hurt as bad as I thought it would, and it's true, it didn't. My leg surgery a few years ago hurt more actually. My chest was pretty pain free except for the spot where they cut through your ribs to access the
mammary artery. They also had wires that went into the new breast, and the nurses would attach doplars to them and listen to the arterial and venous blood flows--how cool! I also had a pain pump that I wore, it involved a little tube that ran the length of my buttock incision and dispensed pain medicine for 72 hours. I also had a demerol drip--very nice touch. There were also two
JP drains, one coming from the new breast, and one in the hip. They drain fluid all day everyday, and you have to keep them until you drain very little fluid, and then they're pulled out. Enough info to make you pass out from probably just reading this :P Although, the clothing changed. I was wearing a
girdle that covered from my stomach to mid thigh. It also had an open crotch area so you can go the bathroom without taking it off. It is a compression garment that I need help putting on. I need to wear one (they gave me two) everyday for at least the next two weeks. I can only take it off for showering. I also have a front closure bra they gave me to wear 24/7 too. There was also a nice
belt I was given with pockets to put the drains in. Very nice and helpful it is, I would have really liked one when I had my mastectomy! The next day they got me up and walking and sitting. They also detached my IV and started me on percocet. Since I could get up on my own eventually, they also took out my catheter. At first it is really hard to get out of bed, you need help sitting up and walking. Then it just gradually gets easier and easier.
The next day was Thursday, which started off fine, but after a nice breakfast my mom started complaining of a sharp abdominal pain. It started getting worse for her, so when the nurse came in to check on me, I asked her to help my mom too. My mom soon was doubled over in the bathroom vomiting. A doctor was called and my mom was assessed. They admitted her to the hospital and performed a CT scan. Turns out she had a very large abdominal mass, and the doctors were going to remove it the next day. Needless to say, nothing like feeling literally completely helpless! Unfortunately my dad could not fly down because he had had surgery just the week before himself and shouldn't travel. Luckily though Doug and his parents were flying down Friday evening and would be able to help. On Friday my mom had her emergency surgery, and it turns out she had an ovarian cyst the size of a grapefruit. Due to the size, the cyst torqued and cut off the blood flow to the ovary, thus causing a great deal of pain. The surgery was done laparoscopically, so my mom has four tiny incisions on her belly. She said she felt so much better after the surgery--and boy was I glad! Doug spent the night that day and I checked out on Saturday. My mom was to stay until Sunday.
That Friday I also saw the doctor, this time Dr. Dellacroce because Sullivan was out of town. He pulled out my breast drain (didn't even feel it), and he also removed the wires that were outside of my chest. At my next appointment he said he would pull the remaining wires out of the breast.
The percocet pills I was on had some crazy side effects. After taking one I had a hard time with balance and had to hang onto Doug when I walked so I could keep steady. It also effected how I urinated, as in making it really hard to do so! It took me practically a half an hour just to pee every time! Needless to say I quit taking it on Saturday afternoon so I could feel a bit more in control of my body. Since then I occasionally take Tylenol or Advil, and have been feeling really well.
Saturday night was St. Patrick's day, and Doug, his parents and I visited Bourbon Street, which was pretty wild with drunk people and lots of bead throwing! I collected beads from the parade that went through, as they just continuously throw them out to the crowd. And no, I wasn't going to bare anything--although I had been to all the doctors and nurses!
The weekend went smoothly and Doug flew back Sunday afternoon. My mom was released and we hung out with Doug's parents doing touristy things. I ate a lot of local food that was really good! I sampled alligator, crayfish, seafood hush puppies, catfish, lobster bisque...all very yummy I might add. That Sunday night in the hotel though was a trip. (We were at the
Marriott Courtyard this time) At 4 am the toilet decided to overflow and flooded the room, so we were transferred to a new room. Then as we were getting ready in the morning, at 7:30 am the power in the whole hotel goes out! Needless to say it got a little interesting before my last appointment! But all went well with that. Only one wire was able to be pulled, the other was still glued inside of me, and I was told to pull it myself a few days later.
Tuesday morning we flew back to Michigan, and my mom and I got to ride first class. It was my first time doing so, and it was nice! My dad wanted to do that for us since my mom and I were still sore from our surgeries. We said goodbye to Doug's parents at the airport and my mom and I ate lunch. Twenty minutes before departure to our connecting flight to Lansing, we noticed they changed the gates and we had to run all the way across the terminal to get to our plane. Then, once we were on it, we were delayed about an hour due to baggage clip issues! My mom and I were laughing by then, what more could happen on the trip? Thankfully that was the end of surprises and it was good to get home. :)
Anika, thanks for the well wishes! I really cannot wait to go to Wayne this fall--I'll see you then!
Anonymous, thank you for such a lovely comment! Please tell me who you are so I can thank you personally.
