Stage 1 Reconstruction

I am sorry that no one has heard from us while we were in New Orleans. I had planned on calling people and keeping the blog updated but things just didn’t work out that way. The wi-fi and cell phone reception at the Hope Lodge was bad. We either had to be in the computer room or go outside in order to make a call or log onto the internet. I basically slept or was too tired or out of it to do anything the entire time we were at the hospital. The problems with reception made it hard for David to work or get a hold of people. David was supposed to be working remotely during this trip so his time was spent taking care of me or working mixed in with keeping his Mom and the kids updated. I apologize to anyone who has been worried about me. I have been able to type a little about what happened while we were gone so here is an update, after the fact.

David and I arrived in New Orleans on Thursday afternoon, July 16, 2009. After we picked up our rental car we checked into the Hope Lodge. Hope Lodge is a place that cancer patients and their families can stay for free while they are receiving treatment related to their cancer. The Hope Lodge in New Orleans has 36 rooms, a large kitchen and dinning area, a library, exercise room, as well as areas that you can sit to relax. It is a nice place to stay. There are people of all ages here. One lady I met is receiving radiation treatment for breast cancer. There are also a few children that I have seen. One has been here for 3 years. His mom is the House Mother here. I think that means that they live here all the time. It is bad enough for adults to have to fight cancer but it is truly tragic when children have to fight when they are so young.

I tried gumbo for the first time on Thursday night. The House Mother made the gumbo for everyone to share. As I suspected it was too spicy for me. After we ate we went to the store to get groceries. All the residents have a cupboard, two buckets in the fridge, and one in the freezer to keep their food in. The cooking facilities are very nice. It is like four kitchens put together.

My first appointment on Friday morning was scheduled for 9 a.m. We got lost on the way there. Driving here is very frustrating because everything seems to be a one-way street. There are very few places that you can make a left turn. Instead there are U-turn lanes everywhere. Sometimes you think that you are going to make a left turn but instead you are forced to make a U-turn and you miss where you were trying to go. After making a call Sally was able to direct us to the hospital. My surgery is going to be at St. Charles Surgical Center. It is a private surgical hospital primarily dedicated to breast reconstruction although since it is still fairly new there are a few other types of patients there until the practice builds up enough to focus entirely on breast reconstruction. Dr. Massey’s office is in a building connected to the hospital. I heard that they have special suites that are saved for the very elite patients that if they were rented out as an apartment in New Orleans they would sale for $1.5 million. I didn’t get to see the suites but another patient told me about them. I might see if she will email me copies of the pictures she took. It makes you wonder who the elite patients might be. Maybe they are celebrities or patients from overseas. I think it might be these special patients that make it possible for the rest of us to receive this phenomenal surgery. I doubt that the fraction of the cost that the insurance companies pay is enough to support such a state of the art facility.

After filling out paperwork, I had a CT scan so that they could see where all the veins and blood vessels are. Ever since I had chemo I hate having any test that they have to inject something into me. I can feel the chemical going into me and spreading through my body then for the rest of the day I don’t feel right. I had to have an MRI last week and then this CT scan, both made me sick. It is almost like I am hypersensitive to everything now. The feeling is almost like a mild chemo.

After the CT scan we filled out more paperwork then met with Dr. Massey. She is so cool. She acts more like a girlfriend that you are going to hang out with than a doctor who is going to have a huge impact on your life. I really like this because you end up feeling very comfortable with her which helps when you are standing there with no close on and she is pocking and pinching your fat. Dr. Massey used a machine similar to what an OB uses to hear a baby’s heartbeat in the womb, to listen to the flow of blood in the vessels in my rear end, the donor site. Every time she located a new one she would mark it on me with a permanent marker. That is so she can make a plan for the surgery on Monday. Originally we had planned on taking a chunk of the fat from the lower area of my butt and using that to build the new breast. After she located the best sources of blood flow she decided to use the fat a little higher up and then lift the remaining fat and skin up basically giving me a nice butt lift. At first I wasn’t too excited about this but after seeing what she had planned I think this will work out for the best. It will also be easier to recover from because I won’t be sitting on the area where the incision is. The incision will be higher up so that I will probably feel it more when I lean back in a chair or when I lay down.

I was supposed to meet at 2:00 with the surgeon that will be doing the mastectomy on my right side before they do the reconstruction on both sides. That appointment had to be postponed until Monday morning because she was handling an emergency at another hospital across town. That left us free to go out to lunch. We walked down the street to a little hole in the wall restaurant called Please U. It didn’t look like much but the food was good and it only cost $20 for lunch. Everywhere you look the restaurants are advertising something called a Po Boy. I think it is basically a sub sandwich on French bread. I will have to try one before we leave. (I didn’t get the chance.)

Saturday we walked around the French Quarter for about an hour. Susan from the Hope Lodge said it was a fun place to shop. We didn’t really like it. The shops were all very small and all sold similar stuff, most of it centered around Mardigras. There were cheap beads everywhere. There are also a lot of things that I would not like my kids to see. I wanted to find something small or maybe a t-shirt or something to take back to the kids as a souvenier but there wasn’t even a t-shirt that I would let them wear. Now I can say that I’ve been there, done that, don’t want to do it again. I get the feeling that life in New Orleans revolves around three things, eating, drinking, and sex.

After we had a late lunch we went to the movie, Harry Potter and the Half Blood Prince. It came out on Tuesday. It was really good. I wanted to see it before my surgery because it will probably be a while before I can sit at a movie theater for an entire show. After the show we bought me some new sunglasses to replace the ones that I lost somewhere between the second airplane and the Hope Lodge. I would have rather have lost my entire suitcase rather than those sunglasses. It would have cost less to replace the contents of the suitcase than the sunglasses. The cheep glasses I bought at the mall are a pour replacement for my Maui Jim’s that I got for Mother’s Day.

On Sunday afternoon we went to church at a small ward about 20 minutes away from the Hope Lodge. Everyone was very nice. I have never been to such a small ward building. Their old building was destroyed by Katrina. They are hoping to move back into it in another month. This one was literally falling a part. David said that going to such a small ward felt like he was in the mission field again. The first speaker talked about how important it is to be on time. I thought this was kind of strange topic but after being here for a week I understand more. Everything here seems to run at least an hour behind. If they say that dinner is at 5:00 that means that they will probably start cooking around 5:00 or 5:30. This is very frustrating to people who like to be on time.

After we went to church we met another couple at the Hope Lodge. The wife is going to have a lymph node transplant with Dr. Massey. They didn’t rent a car because they were just planning on using the limo service provided by Dr. Massey’s office. The only problem with that is that they only take you to and from the airport and to and from your appointments. They needed someone to take them to the store so they could pick up food for the week. Even though it was Sunday we still offered to take them since they had already been there all day and hadn’t found a ride yet. Sunday evening we just hung out in our room.

Monday morning was my surgery. We arrived at the Saint Charles Surgical Center at 6 am. We did the usual preoperative stuff then they took me to surgery at about 7:15. Ten hours later I was done. It seemed like a very quick day for me but I bet it took forever for David. They gave him a pager like you get at some restaurants that gave him periodic updates on how the surgery was going. I vaguely remember waking up for a few minutes in my room when they explained how my pain pump worked, then the next thing I knew it was Tuesday. I was in and out of it most of the day on Tuesday. I would wake up for a few minutes, basically long enough to take more pain medicine then go back to sleep again. On Wednesday I was able to get some of the wires and the IV pump out. That helped so that I didn’t feel like I was tied down by wires everywhere. It made it a lot easier to get around. I was finally able to take a shower. It took three nurses to coordinate that and I was exhausted by the time we were done. Time was passing so slowly. I would fall asleep and when I woke up I thought a long time had passed only to find out that it was maybe an hour later. The nurses were constantly coming in to check out my vitals and to listen to the blood flow in the new veins. I had small wires coming out of my chest which they could attach to a Doppler monitor and listen to the blood flow. At first they listened every 15 minutes. By Friday it was every couple of hours. The wires will stay in until Monday when I go back for a check up. Then the doctor will pull them out. He will probably also pull out the two drains from my chest. The drains at my hips will need to say in for up to a month. I hope it doesn’t take that long to get rid of them. They are very annoying and they hurt when the tissue around them gets bumped or pulled. I can’t believe how much fluid comes out of them. I was very swollen and puffy after surgery but that is going down now.

I was released from the hospital on Friday just before lunch. The ride in the car was hard. The roads here are a lot worse than Utah’s roads. Every pot hole hurt. By the time we got up to our room I was exhausted again. I don’t even remember David bringing up the luggage from the car. I ended up sleeping on an off the rest of the day.

I am struggling with my conflicting feelings about deciding when and how much pain medicine I need vs not wanting to take narcotics. You hear of so many people who have had their lives destroyed after they became addicted to prescription drugs after an injury or surgery. I know I am not close to that but I still hate taking pain medicine if I don’t really need it, the hard thing is determining how much I need. I probably could have taken more and been a little bit less sore but most of the time the pain was manageable with one or two partial doses each day.

On Saturday some volunteers from the local Race For The Cure threw us a Cajun Christmas in July. They served a nice red beans and rice lunch with sausage and salad followed by a delicious cake topped with chocolate covered strawberries. I was able to eat the salad and rice. They also had chocolate covered gourmet apples for everyone. After lunch they passed out Christmas presents which included a Christmas platter, water pitcher, mug, ornament, etc. They are all cute although I am not sure how I am going to get them home. We only have carry on luggage which is already packed full. They also had a professional photographer taking pictures with Santa and a Cajun swamp house background complete with alligators and a Christmas tree with crawfish and moss handing on it. Everyone here is so nice and they go out of their way to make things comfortable for us. It is so nice staying in a place where everyone understands what you are going through and they truly care about how you are feeling each day. The patients staying here are from all over the country. I have met patients from California, Minnesota, Texas, etc. Some stay for a few days, some have been here for months. All of this is provided at no charge to the patients. The Hope Lodge is staffed by volunteers and provided by the American Cancer Society. I hope that we can all remember the good that they do when we have the chance to support them back.

On our second Sunday here I slept in until about 11:30. David helped me get some breakfast and then he went to sacrament meeting. I spent the day watching tv and talking to my parents and the kids. Even though it is very nice here I can’t wait to go home. I miss the kids, my dog, sleeping in my own bed, and just being home.

My postoperative check up with Dr. Sullivan, one of Dr. Massey’s partners, was Monday afternoon. He was tied up in surgery so we had to wait awhile. I am not sure how they know how to schedule things because surgery for one person could take five hours while another person could take seven. I didn’t mind waiting except I was cold. I have had to wear my jacket everywhere I go while I have been here. They think it is hot outside, even with the humidity it hasn’t been that bad, so they turn the AC on high inside. I have been going outside to make calls so that I can warm up. Dr Sullivan was very nice. As expected he pulled out the two drains in my chest. I was expecting it to hurt but I didn’t even feel it. When I had the drains pulled after my original surgery in Utah, I could feel this long tube moving under my skin as it came out, it hurt. I don’t know what was different but I liked this type better.

Dr. Massey told her assistant Ashley that she thinks that my results have been some of the best she has ever had. I like the sounds of that because if things were to remain the same as they are right now I would have a hard time getting used to it. I am still very swollen, both sides don’t match yet, and I kind of look like something out of the movie “Nightmare before Christmas.” Right now I have a lot of big, long, incisions on both the front and back of my body that don’t look very good. The skin on the side that had radiation is very tight. The transplanted skin will gradually stretch and relax and the swelling and extra fluid everywhere will go down. During stage 2 in October, everything will be adjusted and made to look good. The donor site will be adjusted and any remaining fat that doesn’t look right will be liposuctioned away. Dr. DellaCroce, my second reconstructive surgeon, mentioned before the surgery that for many women the second stage is more painful than the first because of all the liposuction that they end up needing. I am optimistically looking forward to my finished product. I will probably look better than I have looked in a long time, if ever. I look at where I am now as just one more step closer to having a normal body that isn’t missing something.

We have been eating at the hospital or at the Hope Lodge since the first Saturday we were here so we decided to go out to dinner to celebrate that we were going home. New Orleans revolves around food. Despite this, I picked Red Lobster because I love their food and I wanted to go someplace that I didn’t have to worry about the food being too spicy for me or having to pick something strange and not knowing what to expect. The food was wonderful but my appetite is still very limited. I wanted to eat more but couldn’t so I boxed up the leftovers thinking I would eat more later that night. I didn’t, I ended up eating it at 6:30 this morning for breakfast. It still tasted good.

After dinner on Monday, we came back to pack up. I didn’t have room for most of the things they gave us for Christmas but the House Mom offered to store the rest for me until I go back in October for stage 2. That was so nice of her.

We got up at 5:45 this morning to try to make our 8:30 flight. It was close. We dropped off the rental car and took the shuttle to the airport. They dropped us at the curb where we picked up my wheelchair. The security checkpoint wasn’t very busy but because of the wheelchair we did get through a little faster with time to spare. There was no way we would have made the flight if I had had to walk. I can get around okay right now but I am slow and I get tired very quickly. Another benefit of requesting a wheelchair to meet us at the plane in Denver was that the attendant who was boarding the flight in New Orleans offered to let us board before the stage 1 passengers so that I wouldn’t have to wait in line to get on the plane. That was very nice of him. We were scheduled to board in stage 3 and would have ended up with our carry on luggage spread throughout the plane even though we were in row 1 seats because all the storage up front was full well before we would have boarded. This would have been very hard for David to do since I can’t help at all. He would have had to wait until the plane was empty to get our bags and that would have made us miss our connecting flight. The consideration of one gate attendant to making my flight a little less difficult helped more than he can ever know. Once again we have been blessed and watched over.

When our flight arrived in Denver we had to circle for 20 minutes before we were able to land. That put us behind schedule because we originally only had one hour before our connecting flight was scheduled to take off. Boy was I glad to see the wheelchair waiting when we got off. Our connecting flight was over 20 gates away which is a very long walk. Denver is also a very busy airport and I know someone would have bumped into me if I wasn’t in the wheelchair. As it was there were a few close calls with people who just weren’t paying attention to others around them and walked right in front of us. The attendants pushing my wheelchair at all three airports all did a very good job protecting me and still getting us there on time. I am grateful for that because I am far enough out from the surgery that the only way the transplant would probably fail now is if I was injured by something hitting me in the chest or falling on me, or something like a car accident. I can still have problems if I overdo it but a simple accident like someone bumping into me at the airport would have hurt a lot and could have done a lot of damage.

We rushed to catch our connecting flight only to find out that it was behind schedule probably because it had been circling also. After a 20 minute delay we were able to board, in stage 3, no nice gate attendants in Denver. I think they were so stressed on trying to keep up with all the delayed flights and the problems caused by this that they didn’t even notice that I needed had been in a wheelchair. The attendants drop you off where you check in and then you walk down to the plane. Standing in line in the walkway leading to the plane was hard because my legs were swollen from sitting so long on the first flight. The hospital gave me pressure stockings to wear to minimize the swelling caused by the excess fluid still in my body after surgery. I know this helped but it couldn’t prevent everything. Once we were in the air, David put his backpack under my legs so that I would put my feet up. We were given free upgraded seats closer to the front of both planes because of my need for assistance after we got off the plane. I thought it was nice because I wouldn’t have to walk to the back of the plane. I didn’t know that the seats closer to the front had more leg room which would not only be more comfortable for both David and I but also safer because there was less chance of the passenger by the window bumping me if they needed to use the restroom. On the first flight the leg room was nice but since there weren’t any seats in front of us we didn’t have anywhere to put our carryon bags. Everything had to go in the overhead bins. On the second flight we offered to put the two larger carryon bags in the checked luggage when they asked for volunteers. There was space under the seats in front of us on the second flights but those seats were first class seats so there was a wall that we would have had to fight with to try to get the bags under. We put them overhead during the take off and landing instead.

I am so glad that I took my friend Kari’s suggestion to buy a pillow for the flight home. I used that pillow to sit on and a small one to brace my back. Between the two of them the flight wasn’t too bad. I am really glad that Dr. Massey decided to use the fat from higher up on my butt because it is a lot easier for me to sit than it would have been had she used the other area. My incision runs basically all the way across my back at hip level, except for a few inches by my spine. It only hurts if something touches it. I positioned the smaller pillow so that it was just above the incision so that as the plane bumped around nothing touched the sore area. That was a lot better than if I had had to sit on the incision for the approximately 5 hours we were on a plane today.

Once we pulled back from the terminal in Denver our plane just kind of sat there for awhile without taxiing to the runway. Finally the pilot came on the intercom and announced that they were trying to determine if a “small animal” that was supposed to be on board had been loaded, it hadn’t. After they located the dog they tried to load it where we were, away from the gate. That didn’t work so we had to pull back to the terminal so they could try again. Finally after a 30-40 minute delay we finally took off. When we were boarding the gate attendant announced that there was room for standby passengers because several people were missing the flight due to connecting flight delays. I thought it was very funny that they never hold a flight for a person or luggage but they did for this dog. I wonder if the owner was on board worried about their pet and just didn’t want anyone to know that it was their dog delaying everyone. The flight delay didn’t bother me but I wasn’t going to miss another connection because of it. I felt bad for those who might have had problems because of the delay.

We landed in Salt Lake at about 1:40 and were home by 3:00. The kids were excited to see us but Bear went crazy. You’d think he hadn’t seen us for two weeks. It was a very long day but nice to be home.

Stage 2 is scheduled for October 29th.

Some more good news. The tissue around my healed scar on the left and the breast removed from the right were both biopsied and both came back as cancer free.