You are currently browsing the monthly archive for January 2010.

Well, my follow up didn’t go quite as well as I had hoped. I still have the drains. Until the output is almost gone, they have to stay. When it’s all said and done, I’m okay with that. The alternative would be worse if they were to be pulled too soon. The risk of developing a seroma is too high. I don’t need any more complications. For now there is still significant swelling on the left side of my abdomen and a weird, hard area below the incision. That spot is painful, too. There was some concern on the doc’s face when we were looking at that, but we’re only one week out from surgery. As she said, she was “monkeying around” in that area so we’ll keep an eye on it. I’m also restricted from work 2 weeks longer than originally planned. I’m hoping to go back to light duty after the 21st.

The drains remain…2 bulbous friends set right in my abdomen area. Exactly where I need more girth, right? I have them pinned to my post surgical garment (very sexy) so they don’t fall and pull. I’m trying to pin them strategically so it looks like I have something in my sweatshirt pockets. Yeah, I’m wearing hoodies all the time to try to hide them. They would just freak people out if they were visible. Nasty looking if you’re not used to seeing that kinda stuff. These things make everything difficult. It takes me a good, long time to get out of my garment, without dropping the drains and yanking on them, pin them to a shoestring around my neck and get in the shower. ..then reverse the whole process to get dressed again. It takes forever. Thank God, I have have Ali helping me. I don’t know how I could do it without her. The damn garment is so tight, getting the clasps hooked  would be impossible without help since I can’t pull or push on anything. Ali scolds me to get my hands out of the way if I even come close to trying to help. It’s hard. The bathroom is always hot when I’m done with the shower so she gets all sweaty just trying to get me dressed. It’s all something we’ll laugh about later. Heck, we’re already laughing about it now. Hilarious stuff, man. Seriously though, poor girl.

We spent the day at her doc for GI stuff and then driving to Novi for my doctor. Ali was so funny when we were done with my doctor. She was disappointed that it was so quick because we drove an hour to get there. I told her I would drive 5 hours to get to this doctor even for a 5 minute appointment. She said, “You weren’t the one driving.”  Good point. Plus, she had to deal with my back seat driving. I really am bad about that. Impossible. Poor girl.

Once we were back in town, we stopped at the bookstore. Somehow, I managed to leave my book somewhere in the Sparrow Professional Building. I was re-reading the Red Tent so losing the book didn’t upset me too much. It was the bookmark. Man, I liked that bookmark. It looked like a tapestry rug, sorta. Nothing fancy. No silly strings attached. No pictures that might clash with whatever mood the reading put me in. I know, I’m weird. I checked with security to see if the book had been turned in. Nope. I hope someone gets some enjoyment out of their find. It really is a great book. It didn’t take too long at the bookstore and I replaced the Red Tent with a history book about King Henry VIII’s children and a DaVinci Code(ish) book. Oh, and a new bookmark. Not a good one, just one of those little things that looks like a big nose and two hands hanging on to the top of the page. Hey, it was only a buck.

As far as productivity goes, I got a lot of my photos scanned. Now I have to edit them and organize them into folders. I have an entire second box to scan. That will take forever, but I’ll get started on it after the open house on Sunday. I feel good about this past week, though I was so bored. This week will be better. I’ll be more awake as I need less pain medication and I regain strength. Maybe I’ll pull out the crochet bag….maybe.

Tomorrow, I look forward to hearing how my unbelievably terrific son did in his hockey game. Andy says I won’t believe how well he’s skating. It’s true, Brennan has always skated up or down to the level of his teammates. He’s on a very good team out there. Apparently, he’s fitting right in. It kills to be away from them. Anyone who knows me well, knows I am a nut about my kids sports. I love, love, love hockey and lacrosse seasons. There is an amazing feeling I get, watching my kids play sports. Now, I’m missing it. I never miss it. I’ve only ever missed a handful of games, even when I worked midnights. Right now, in spite of being laid up and painful, the hardest thing is having the family split up. We talk every day, but I miss my boy so much. They’ll be here in 2 weeks. Brennan has a week break in his school schedule and Andy has some work to do here. I’ll have a whole week with them! I can’t wait. I can’t wait. I can’t wait.

Here I am again. I have 2 drains this time. But, this time, I keep feeling like I want to laugh. I’m happy. I am so happy my surgeon found the problem. I had been complaining about the abdominal bulge forever and I know she was getting a little frustrated by it. My CT scan showed no hernia, but I was insistent that something was there. My surgeon here in Michigan, Dr. Studinger, had me call my Texas surgeon, Dr. Spiegel, to run it all by her. I was told I needed another surgery to place a mesh like material in my abdomen. Dr. Spiegel thought it was probably an issue with the facia, which isn’t uncommon. Turns out, she was wrong, which isn’t her fault. She wasn’t even able to lay eyes on me, other than the photos I emailed to her.

Dr. Studinger opened me up and didn’t see anything right away. She was going to secure the support material and close me up, but decided to take a closer look. I’m so glad she did. She didn’t have to. All looked normal; she just wanted to be sure. She found that my muscle on the left (a portion of it) was actually detached. It was unattached and folded in on itself, toward the middle. I knew it! I am very lucky to have found Dr. Studinger. It’s been a little strange having had 2 surgeons, but Dr. Studinger is wonderful. So, here I am with the source of my problem finally discovered and actually fixed.

Of course, the chances of recurrence are high, so I have to be extremely cautious. I’m just elated to have it fixed and in 6 months I can be back to normal. Perfect timing. Six months until summer. My favorite time of year. Six months until I can be back in the gym doing spinning classes and lifting weights. Six months until I can go on a roller coaster, camping and hiking without being a burden to my family. Hahaha I can’t wait!

For now, I’m emptying the drains twice a day, watching for signs of infection, coughing and deep breathing to avoid lung issues and getting lots of sleep. It took a lot to get my pain under control while in the hospital. I only had to stay one night, but this hospital won’t allow fentanyl IV unless the patient is in the ICU. I can’t take morphine or dilaudid without extreme nausea and vomiting. With my abdominal incision, I couldn’t take the chance on vomiting. I knew fentanyl worked from my last surgeries, but I couldn’t move to the ICU because there were no beds. I had to pee so bad and ended up holding it for about 2 hours because the pain was too intense to get out of bed. I thought I would pass out or vomit, or both, from the pain. After a few hours of having a duragesic patch in place and taking percocet, I was able to get to the bathroom. The pain was still incredible, but I no longer felt like I would pass out or vomit. And in all the drama of pain and lack of pain control, everyone was very caring, but for one nurse. They even had the ICU doc come for a consult and I was given the option of moving. At that point, it would have been ridiculous to take an ICU bed, not being critically ill. I chose to stay where I was and the pain gradually got better. Every time I got up I was moving a little better than the last. Just like a pro, lol. Ali was so helpful and they let her sleep in the room with me. My daughter is amazing, truly.

I want to apologize for how choppy this post is. I blame it on the pain medication. With that said, I want to tell you some crazy things that happened. Overall the stay was great and everyone was so good at their jobs, until I left. The tech couldn’t get my IV out. I was trying not to hurt his feelings by saying don’t touch me and let me do it myself. It was like a train wreck. When it was finally out, he pushed me in the wheelchair to the discharge bay. He drove so fast over the bumps I was no longer concerned for his feelings. I wanted to punch him. Ali went to get the car and the guy says I can get up so he can help me with my coat. I get up and he doesn’t help with the coat. I did it myself and thought I pulled a stitch in my breast (touch up work). I was so mad at this point. He had to swipe me into the ER area so I could go in the bathroom to look. Everything looked okay so I went back out to meet my daughter. Only I couldn’t get out. There was a lady loading a copy machine with paper. I hobbled over to her. I knew I looked like hell and my face was all red because I had just looked in the mirror. I asked the lady to let me out. She said security had to do it. I thought, okay let’s get security. I hobbled around in a circle, looking for security and asked her again. This time she raised her voice at me. Bad idea. Turns out she’s an ER greeter. She got a royal complaint against her they opened the door for me. What the heck? It was so strange. My stay was great but my discharge was hell. Then, driving home, we got a road rage college kid messing with us. The freeway went from 3 to 2 lanes and this guy was apparently in the lane that was ending. I was faded out from the pain meds but became very alert when the guy started messing with her. I woke when Ali said some explicative and couldn’t move over for this guy. She had the car on cruise control and the guy was trying to jet past. I told Ali to slow down, but the guy dropped back just then. Of course he kept messing with us, by pulling up and flipping us off and boxing us in with other cars. I had to call 911. Crazy! After about 15 miles of this he finally got off the freeway and left us alone.

So there is my update, choppy as it is. I’m home safely, I’m happy with the result and love my doctor. I’m excited that my life is back on track, so excited. The only thing missing now is my husband and son in Boston. It’s all in the works, though, and I can’t wait.

Last night I ate a haagen-dazs ice cream bar, preparing to start weight watchers this morning, A-GAIN. It will be a while before I can do a lot of physical activity to get the weight down and, frankly, I can’t do this by myself. I have had enough of everything right now. Don’t get me wrong, I’m in good spirits. I’ve just had enough.

The complications in the abdominal incision may, or may not, have led to a bulge in the left side of my abdomen above the incision. I have complained about this at least since July. It’s something we’ve “kept an eye on”. I’ve had to take things easy and limit activities that can strain the abdomen. Hello! That’s damn near everything. I roll over in bed and I have to use my arms and legs to work myself into position. With the added weight I have I seriously have the mental image of a sea lion moving around on land. Okay, at least I didn’t say “beached whale”. I’m not there yet. But it’s not easy getting back to sleep after I’ve been made acutely aware of my weight and decreased mobility yet again. I was told, a while ago, that I could do some light working out as long as I didn’t isolate my stomach at all. I tried minimal activity at the gym, but I just swelled up and the bulge would feel harder. When I came back to work after my second surgery it started to get even worse. I would swell so badly, my compression garment was too constricting after only four hours into my shift.

Something’s wrong and I felt like not enough was being done to figure it out. I’m 8 months out from my DIEP and I should be back to full activity by now. I got my surgeon to order some tests. We ruled out a hernia, but the surgeons feel it’s an issue with the facia. So, I’m scheduled for another surgery on Thursday. This time, they will put a mesh in, hopefully alloderm, to support and strengthen the area of the incision. They symmetry issue of the nipples will also be taken care of-hopefully I’ll be done after this. I have such a rough time with surgeries, and I’m  no wimp. My body just takes it hard. After the last two I required transfusions and after the second I was admitted for almost a week. One of my co-workers, a friend, was one of the providers that cared for me on that admission. When I told him I needed another surgery, he said, “Geez, that makes me sweat-and not in a good way”. I laughed, but it’s true. It’s scary.  I’ll be off work for 2 weeks, then on light duty for 6 months. Which means, I will not likely return to my emergency nursing before moving to Boston. This makes me sad. I have friends that I will miss so much. I’ll miss the work. I complain a lot, but I truly love making someone’s life a little better, even if it’s for a moment.

Two days ago, I took care of a 2 year old boy and I just fell in love with him. I was helping another nurse as we prepared to do some procedures, including starting an IV. He kept smiling at me as his aunt was reading a book to him while we got things ready. In the middle of the trauma of a urinary cath, he pushed a toy and the book away (family was trying to keep him distracted) and said he wanted me to read him the book. He was crying and needed the distraction, but he wanted ME to distract him. Even after I started the IV on him, he still gave me a hug. Yesterday, I made some patients laugh about silly things while they waited for lab results or I started IV, or other not so grand things. These are the moments that make me feel better. The moments I will miss. The moments when I know someone’s bad day was a little better because I was able to help them.

Today, Tuesday and Wednesday are my last days on the floor in the emergency room. I believe everything happens for a reason, just the way it’s supposed to. I’m on a path and I’m not sure where it’s headed right now. Well, that’s not completely accurate. I know the general direction, the lighting’s just a little dim. Soon enough, the lighting will be brighter and I’ll have more solid footing. For now, it’s like getting up in the middle of the night to go to the bathroom. I know where I’m going and I know the layout, but did I remember to pick up anything that could cause me to trip? That’s what it feels like to me. I have so much to be thankful for and so much to be hopeful for. When the light is shining brightly in a few months, I pray all will be well with my family, we’ll all be together and with new friends in Boston. I hope to be be back in the gym, doing all the things I miss. I hope to be in a job that brings me joy. I hope to be either teaching again, or back in school myself. Bring on the light!

I had a friend ask about the medical stuff I post. This is for you, Aida. Thank you for the love and support you give me! I’ll talk a little about all of it, from the beginning, but I’m not an expert on any of it. This is just information I have learned as it relates to the experience I had.

BRCA 1 and BRCA  2 are the Breast Cancer Genes 1 and 2. They are rare genetic mutations that have been found to be associated with an increased risk in the development of breast or ovarian cancer. There are hundreds of these types of mutations, but only 2% of general population have any mutation at all. Approximately 90-95% of breast cancer is NOT caused by BRCA mutation. My specific mutation is 1083delG, which means that is the specific location of my mutation on the gene. I am BRCA 1 +, but no mutation was found on BRCA2. I have a friend that is positive for both. The general population has a 12% risk of developing breast cancer and a 1.4% risk of developing ovarian cancer. My mutation increased my risk of breast cancer to 87% and ovarian cancer to approximately 44%. There are other cancers associated with BRCA1 and 2. I also have an increased risk of melanoma and pancreatic cancer. The males in my family, if they have the mutation are also at an increased risk of prostate cancer. Each of my children have a 50% chance of inheriting my genetic mutation. (Some of this information was obtained from labtestsonline.org)

Prophylactic (preventative) bilateral mastectomy (PBM) is one of the options in dealing with a BRCA mutation and it’s the option I chose. Some women choose to be hyper-vigilant and have more frequent screening to include MRI and lab tests. Once a decision to have a PBM is made, there are different types of surgeries available and different options for breast reconstruction. I chose the Deep Inferior Epigastric Perforator surgery, which used my own belly fat to make new breasts (called flaps). During this surgery, a general surgeon removed my breast tissue and nipples, while sparing the skin. Some women choose to keep their nipples and some choose not to spare any tissue. In case of removing all skin and nipples (usually when an actual cancer diagnosis is made) reconstruction choices are limited. These women usually end up with expanders, which are like implants under the skin where the actual breast implant with go later. Every week, more saline is placed into the expanders to stretch the skin in oder to accommodate the implants later. When the skin is stretched enough and the pocket is big enough, breast implants will be placed in another surgery. Again, in my case, I had no cancer diagnosis and chose to spare my skin. The breast tissue was meticulously removed while the plastic surgeon harvested my belly fat to make the new flaps. The abdominal skin and tissue was separated from my muscle and belly button. The blood supply for the new flaps was harvested by making a perforation in the abdominal muscle to obtain blood vessels underneath. Using microsurgery, the vessels are attached to the vessels in breast area when the flaps are transferred to the chest. During this time nerve endings are also reattached in the hopes that some sensation will return. There has been some success with this, though not yet with me. After the tissue for the flaps was removed (the belly skin was discarded) and brought up top, the space was closed by pulling the edges together. The incision below my belly button was pulled down to meet the incision above the bikini area. A new belly button was made and I have an abdominal scar that goes from hip to hip.

During the surgery, Doppler wires are placed in each flap to detect bloodflow every hour after surgery. There is a risk of the flap “dying” if blood supply gets compromised. There are also drains placed to remove excess fluid accumulation after surgery. These drains are clear, plastic bulbs attached to long clear plastic tubing which is embedded in the surgical area. I had two drains in each breast and one drain on each side of my abdomen. The bulbs are squeezed tightly, expressing all the air, then capped. This creates a suction that removes the fluid. Twice a day, the drains are emptied and the amount of fluid is recorded. This is a guide that is used by most physicians to determine when the drains can be removed safely. A complication of removing the drains too soon is a seroma. This is just a buildup of fluid that has nowhere else to go and is too much for the body to reabsorb quickly enough. It’s not infected fluid, though it can become infected. Often the fluid buildup is very painful and needs to be drained every week until the body heals. Calcified areas can remain after the seroma is gone. I’ve read about people who had no drains after surgery and the complications were horrific. I don’t like the drains and the skin around the sites is tender and painful when I move, but I would gladly endure this to avoid the other possibilities.

I think that’s most of it, in a nutshell. Let me know if there are other questions and I will post information, or links, to explain it.

Did I really think there would be down time from the whole BRCA stress? Nope, that’s never going to happen. I’m just going to have to learn how to manage the stress better. Learning about my genetic mutation has allowed me to learn a lot about myself. It’s not all bad stress. But today, it’s leaning toward the darker end. My daughter, almost 18, no longer wants to wait to get her genetic testing done. She has in her mind that she will get the prophylactic bilateral mastectomy as soon as possible, if she is positive for the mutation. We, obviously, have a lot of talking to do. The main thing I want her to consider is the impact on breastfeeding when she does have children. This surgery is a big step to take and she’ll be missing out on something I consider to be one of the biggest blessings in having children.

I told my husband and he literally flipped out. Ali is very young to make this decision, I get it. I just don’t want to make this decision harder than it has to be for her. She is, ultimately, the one who has to make the decision about her own body. She remembers the death of my father, who was like a father to her as well. She was old enough to know the pain we all suffered with my mother’s illness. My mother’s death did it’s damage to her. Like me, she’s terrified of what the genes have in store for her. I won’t tell her she can’t have the testing done. I won’t tell her she can’t have the surgery. I just pray her test is negative so we don’t have to go down that road.

Ali’s never been one of the girls who is focused intently on her appearance. Yeah, we can be late someplace because she’s taken too long getting ready. That’s in her genes, too. What can I say? But, overall, she is so far from the hair/makeup type girl that it’s actually frustrating to me at times. She’s never cared about boobs. In fact, growing up, her whole thinking was “less is more”. Now that she may be faced with this decision to have them removed and reconstructed, I know it’s easy for her to say “let’s do it.” That is not a make or break part of her body image. I’m proud of that, yet it worries me. I don’t want this decision to be easy. Yes, I want her to be comfortable and happy with whatever she decides to do, but I want it to be a heavy decision.

This is my funny, beautiful, strong willed, incredibly intelligent, stubborn, true spirited, angelic daughter. My baby girl whose hands I look at now and still see the little baby girl hand holding mine. My girl who used to laugh so hard it would make her get hiccups and when she was a little baby she would spit up from laughing so hard. That was a warning I had to give everyone. You’re gonna make her barf if you keep that up. But her laugh was infectious and hilarious, so she spat up a lot. This is my girl who I used to watch sleep, marveling at how big her eyes looked even when they were closed. I used to watch her run on the soccer field with the other little ones, chasing the ball all over the field, bunching around the ball, not knowing what to do once she was close enough to actually kick it. My girl who’s true spirit held me physically and emotionally when my dad was taken away. My girl who’s courage blew me away over the years of riding horses and getting thrown, a lot. She rode the biggest breeds, making it look so easy. She even made falling off look easy, landing on her feet a couple of times. My girl, who is now grown and looking for colleges. She loves to engage me in conversations that will frustrate me, things like philosophy and alternate universes, things I can’t get my brain around. My girl, who has become my friend, who I am ultimately proud of and would fight to the death to protect.

So, we are scheduling an appointment with a genetic counselor for her to be tested. They may not test her until she’s 18, but that’s in April so I’m hoping they’ll do it. Then we’ll do the counseling part and maybe even a regular counselor to cover all the bases. I just want to make sure she makes the right decision for the right reasons. I don’t even know how old she’ll have to be to do the surgery. I saw there was an 18 year old in England who had it done. I didn’t tell Ali. If she’s positive, a lot of things will have to be considered and it will be a long, emotional road.

This is actually 2 years old-gotta scan the new ones

Every day “funny” has a different definition. At this moment, for instance, my daughter is urging me to bed “it’s your bedtime, mom”. My beautiful, intelligent, full of light, immensely frustrating at times daughter is telling me it’s time for bed.

We had a good day today, though we are missing my husband and son. We’re in the process of moving to the Boston area. My husband, Andy, has been there since October and my son, Brennan, just left to finish the school year there with his dad. We were thinking it would be good for him to make some friends before summer break. We have good friends there already, thankfully. They are making the move much easier. My son was welcomed with banners and a pizza party with neighborhood boys his age. He had his evaluation skate for the hockey team tonight and that went well. We are so excited for him, but we miss him so much. I have the door to his room closed so my heart doesn’t break when I walk by. In spite of missing them so much, Ali and I did have a good day.

We started off a little late after sleeping in, which was so nice. Then we picked up the house (easier with just the two of us) and went out to lunch. There is the greatest cafe downtown called Mama Bear’s Cafe. I had the best sandwich I have had in my ENTIRE life. I think it was called the Missy. It had provolone and prosciutto and tomato and spinach and the bread was amazing. Can you tell I’m pretty motivated by food??  Ali loved her sandwich, too. Tofu, I think. And we had the yummiest coffees! Great “feel good” food on a snowy day. It was nice to sit and talk to my almost adult daughter about grown up stuff. Last night we were up late playing music for each other from our iTunes libraries. That was interesting. It’s amazing how much alike we  are in so many ways.

After lunch we came home and I dinked around with the garage door openers. One remote opener wasn’t working , so I bought a universal opener. Damn if those simple instructions weren’t completely complicated. Somehow, while trying to program the universal, I must have reset the opener I had and it started working again. The universal is getting returned tomorrow. Of course, all of my efforts were being managed by Ali. Rather, she was telling me to get down from the ladder so I wouldn’t get hurt. Garage door fixed, we headed to the movies.

I had already seen New Moon, but Ali has only been back from exchange studies in Uruguay for a month so that’s the one she wanted to see. I didn’t mind seeing it again-it wasn’t so bad. We critiqued it and compared it to the first movie, Twilight. We’ve read all the books, yes I admit it. They were like a dumb sitcom you just can’t stop watching. Mindless entertainment, but entertaining nonetheless. Ali feels the same. She’s not one of these girls who is wrapped up in the vampire thing, picking teams and all that. She’s a Harry Potter nut. In fact, she wanted to make a “Team Potter” shirt to wear to New Moon. For all of you who don’t know, there are girls wearing shirts with “Team Edward” (the vamp) or “Team Jacob” (the werewolf) and others, I suppose. I told Ali I wouldn’t go with her if she wore that shirt. I still have some say.

Then off to the grocery store, where we worked together to “save” 40 bucks using our Kroger card, came home, fed the dogs and sat down to watch another movie. This one was torture! Best in Show was not the best in show as far as we were concerned. Unlike the sitcom you can’t stop watching, this was like a train wreck we couldn’t stop watching. There were some funny parts, but we could have picked a better movie to watch. Even so, today was a day during which I thoroughly enjoyed my daughter’s company. You know when you feel so happy it actually feels like your heart swells a little bit? That’s how I feel when I think about how much fun it is to spend time with my baby girl. She’s become a beautiful woman and I am looking forward to so many more days like today.

I am grateful for my blessings. I am grateful for the knowledge I have about my health. I am grateful that this knowledge might keep my daughter safe and healthy that we might have a great many days like today. With that, I will obey my daughter and go to bed. Good night.

This photo was taken by Jennifer Dery of Jona Photography

 

//

I don’t recall the flight home at all. I don’t even remember my husband picking me up at the airport, or the drive home. I have a very poor memory anyway, but these memories had no chance with the pain medicine I was on. I do remember being immensely relieved and enormously happy too be home with my husband and kids. I missed them so much. They were wonderful at taking care of me. My kids, Ali and Brennan were always asking if I needed anything. They helped me get in and out of the couch (yes the recliner was my home yet again). My husband was so much better than I could have hoped for. He always has been at everything, even when I’m hard on him and not so nice. He’s always making me feel like everything is going to be okay. So, he continued what he always does and made me as comfortable as possible. The living room was my bedroom, yet again. I had everything I needed and I was seriously doted on. I’m surprised they didn’t go so far as to give me a little silver bell with which to summon my attendants. Seriously, though, I am a very lucky woman to have the support I do. I love my family.

Once home, I settled in to begin the long process of healing, which continues to this day. I had the one drain in my abdomen, which I emptied every night. As soon as the drainage decreased enough, I could pull it out. It wasn’t too long before I was able to remove it. I did it myself at home-completely painless-with the permission of my surgeon. I was free! No more “things” connected or coming out of me. Ahhhhh. However, I did wear a post surgical compression garment, I’m actually still wearing them to this day. They’re awful, but a blessing a the same time. Sometimes I feel like I’m being suffocated, yet they compress my body and keep the swelling down. I’m more comfortable, in terms of swelling, when I wear them. But there are times when I need a break. The garments go from my torso, just below my breasts, to just above my knee. They’re like shorts that go up to my breasts and boy do they compress the tissue. Hah, they’ll be useful even when I’m healed completely, particularly under jeans to hide the ever present jean inducing muffin top.

Not long after I came home I had a setback with my abdominal incision. It began to open on the left side. I went to the emergency room to have it looked at. It never got infected, but it opened in the oddest way. I had about a 3 inch long area that just came apart. I to go to the wound clinic several times each week to change the dressing and packing of the wound. As that opening healed a new one to the right of it would open up. It was so strange. I think it’s because there was too much tension at the incision site. I was almost as if the tissue between the sutures gave way and stretched apart. So it continued until October, when I went in for my nipple reconstruction and scar revision. There was one last small opening remaining when I went in for surgery, but the revision took care of it. Having an open would takes a lot out of you, even if it’s not too painful. It’s worrisome, to say the least. All the horrible infections that can set in were always on my mind, especially since I come into contact with any number of nasty infections every day at work. Having an open wound is also sort of demoralizing. I felt even less than myself. I had strange flaps that were shaped like breasts, but had no nipple. Okay, to be honest I didn’t really miss the nipple thing. I never had to worry about them showing through clothing. The open wound just added to my feeling “off”. The surgeons aren’t sure why it opened the way it did, but I’m sticking to my theory. There never was an infection, thank God.

I gradually got my strength back and was able to do basic, normal activities. I still lacked strength and a little activity took a lot out of me, but I was making progress. The surgery was in the first week of May and I ended up back at work by the end of July. I wasn’t the same. I was slower, maybe I even cared less about what I was doing. I was emotionally tapped out. It started to get a little bit better, but I was still changing the dressings in my abdomen daily.  Sometimes, I would have a friend do it at work and sometimes I would go to the clinic. Quite a few people knew what I had been through, and why. I think the majority of people who found out just thought I was either overreacting or having some cosmetic work done. Most people don’t understand, with the exception of a very few. Ultimately they don’t matter, their opinions don’t matter. I did it for my family’s future. I want to grow old with my husband. I want to watch my son and daughter continue to grow, be there when they need me and celebrate their achievements. I want to see my grandkids get married. I want to see my great-grandchildren. The people who look at me at work with judgment in their eyes can “you know what”.

It’s now January. I’m back at work after the nipple reconstruction in October. I had a little setback right after the nipple reconstruction and had to be hospitalized for a possible infection. Again, I needed a blood transfusion and fresh frozen plasma. I’m now on a reduced hourly schedule, but I’m back at work. The nipple reconstruction had me worried for a bit. They were huge, and I mean enormous, after the surgery. All I could think was, “this is not gonna work, not what I had in mind”. i had teased a friend about the process of the reconstruction before I had the DIEP done. She asked how they would determine how to construct the nipple. I’m usually not good at joking with people, but I couldn’t resist. I, flat faced and matter of fact, told her I was going to pick them out of a catalog. I still laugh about her reaction today. It was hilarious. Well, if I could pick them out of a catalog, I wouldn’t have picked what I had. I was reassured that the swelling would go down quickly and it did. Aside from a small symmetry issue, which will be easily remedied, they’re actually okay. I have to massage the breasts everyday to decrease the firmness and help them heal in a way that looks most natural. I’m pretty happy with the way they turned out overall. I only have the tattooing of the areola left. It amazes me what science can accomplish. There was a time when I felt so depressed after showering at the gym (after doing what minimal workout I was able to do). I was embarrassed to have anyone see my nippleless flaps and worried that it might freak someone out. I think if the ladies in the gym locker room were to see my breasts (I can actually refer to them as breasts without feeling weird about it now) from a short distance they would think they were completely, naturally mine-after the tattooing of course.

My cousin, Ben. He’s the most wonderful, sweet, loving, giving man. I consider him more of a brother. And his wife, Miki…truly a special person. They took care of me. I had instructions to sleep in a recliner and they made me as comfortable as possible. Miki even washed my hair! She giggled as I walked like Quasimoto, yeah I looked funny. I wasn’t allowed to stand up straight so I wouldn’t stretch the abdominal incision. I was twice as wide as before my surgery, walked like a hunchback, my feet were so swollen I couldn’t see any bones. I was a sight to behold. At one point, and this really freaked me out, I could feel the fluid in my feet jiggle when I took a step. Yuk! You could even see it wiggle like jello on the top of my feet. I had the 6 drains pinned to my clothing, but they weren’t easy to hide. When I showered, I pinned them all to a shoestring hung around my neck. It was insane-very surreal. I emptied the drains each night and I was praying the output would be low enough that they could be removed at my follow up appointment.

I spent the next 2 weeks in Ben and Miki’s recliner. You know, I should also mention that they were expecting their first child. I just missed my little Xander’s arrival. Though Miki was very pregnant and Ben was working so hard, they made me feel secure. I slept in the living room. Sometimes I went outside on the deck, but the mosquitoes were horrendous and I had enough to worry about without having to scratch places I couldn’t reach. Oh, but I longed for the feeling of the sun on my skin. I had my schedule of pills to take, pain pills, muscle relaxers, anti-inflammatories. I was comfy. I don’t remember pain at that point (I had enough meds), only the inconvenience of not being able to move well. I remember one morning I woke and didn’t want to wake Miki up. I was trying to reach a box of cereal or something. This was a box I normally could have reached without any effort at all. On this day, I kept my elbows tucked to my side so I knew I wouldn’t lift my arm, stood on my extreme (I do mean extreme) tippy toes and, with my finger tips nudging the box ever so slightly this way and that, I got it down. Triumph!! I had a lovely box of cereal and didn’t have to bother anyone to help me. My lovely Miki remained peacefully asleep.

The 2 weeks passed quickly. I was increasingly worried about my follow up appointment. I had the Doppler wires to be removed and six drains. Okay, I just remembered the pain I felt. It was from the drains in the flaps. Those suckers hurt! It wasn’t a deep pain, but every time I moved the tubing moved and the skin around it would burn and pull. That was pain and I wanted the drains out so bad. The thing that scared me was I kept remembering when I would have to pull drains on post surgical patients when I first became a nurse. It was always so painful for the patients. With those memories in my mind, I took a pain pill and Ben drove me to the doctor’s office. I knew I was goofy and loopy from the medication, but I didn’t care. I was wearing and enormous (it would be so cute if I were smaller) sundress and had all the drains pinned within the baggy area so no one would get freaked out by them. I was brought back to the room and I expressed my fears. They reassured me and as they were talking to me I realized they had already pulled one of the drains out. I felt nothing. Thank God. All worked up for nothing. The Doppler wires were the same way. The flaps were so numb I felt nothing but a tugging feeling when they came out. I’m still amazed at what science can do now and so grateful that both of my flaps “lived”. Had the bloodflow been compromised at any time they would have “died” and I would have had to start all over again with fat from my buttocks. Plenty to spare there, too, though. So, all but one drain was removed. That final drain, one from my abdomen, was pinned to my dress. I remember asking they physician assistant about a small area on the left side of my abdominal incision, that seemed different. I imagine, if I had sensation along the incision, it would have been tender. I was worried about infection or the wound opening up. I was reassured and given instructions to keep and eye on it and walk more hunched over. Really? So, that was just about it. I had been fitted with a surgical garment to wear all the time, then Ben and I headed home. When I left Ben, my Aunt Ginger came pick me up. We drove to Plano and I spent a couple of nights with her and my Uncle Ted before I was able to fly home to my family.

The flight was really uneventful, but I wasn’t sure I was going to be able to get on the plane. I had the super sexy compression stockings to wear on the airplane (the white socks that go all the way up the thigh) and I was ready to go. I was wearing my trusty large muumuu dress, but the stockings were still visible when I sat down. My aunt helped me get checked in and made sure I would have help getting on the plane. I must have looked like hell, though, because one of the airline employees didn’t want to let me on the plane without a letter from my doctor. I walked like Quasimodo, don’t forget. I looked exhausted (drugged), unkempt and uncomfortable. I’m not surprised the employee wanted proof that I had clearance to fly. It wouldn’t have been a big deal, except it was the weekend and no way to get a hold of my surgeon for this. My Aunt Ginger and I sat there and watched her get on the phone with someone. I hobbled, with my aunt’s help, to a different area and hid from anyone who might try to question my ability to fly. They must have figured it was okay because I made it through security and was headed home. I was going to see my family again, finally.

Before I continue where I left off, I’d like to wish everyone a very happy new year and all the best in the year to come. I have hope, lots of hope for my future. My family is healthy and happy. We’re planning a move to the Boston area and are looking forward to new beginnings. Andy and Brennan will be in Boston, while Ali and I remain until she graduates, but time will pass quickly and we’ll be together again soon. Just like my surgery, painful and challenging, this process of moving and being separated will lead to a new, promising life. I’m looking forward to 2010 and the new experiences it will bring. I’m looking forward to the healing my body will continue to do. I’m looking forward to getting back to the gym and being able do all that I used to do before. It’s going to be a good year.

Well, the approval for surgery was done and all the preliminary test results (EKG, cardiac stress test and lab-work) sent in. I got things ready for my leave of absence and the kids being taken care of while my husband was with me in Texas. We have great friends that have come through for us when we have really needed them. They’ve helped keep my family together in more ways than one and I don’t know how we can ever show how grateful we are. With everything taken care of, my husband and I drove from Michigan to Texas. We stopped to visit my beautiful Aunt Ginger (my dad’s sister) in Plano (outside of Dallas) on the way. We stayed for one night and then went on to Houston, where I was to have surgery. We stayed the night before with my cousin, Ben (my Aunt Jean’s son) in Houston and my husband stayed with him while I was in the hospital.

I had prepared as much as I could. I had the amazing women on the FORCE message boards who provided me with some of what to expect. The surgery took all day. We knew it would be about 10 hours, but it ended up being even longer. I bled a lot. The surgeon even came out to ask my husband if there was some medication I was taking that I may have forgotten to mention. There was none and I was still “oozing”.  When my bleeding was under control I was moved to the ICU. The ICU was not unexpected. With the DIEP, patients spend one night in ICU then move to the general medical floor for another few days. I had 6 drains, one in each side of my abdomen and 2 in each flap. I also had Doppler wires (truly wires) in each flap. They had hubs at the end to plug into a Doppler machine so the bloodflow to each flap could be monitored. When I woke in the ICU I wasn’t aware of my extra “equipment”. I knew my husband was there and I knew my hands were enormous. They were so swollen I couldn’t even see my knuckles. I had a lovely hospital water pitcher on my bedside table and there was a clock on the wall above the door. I remember nothing else until I was moved to the regular hospital room.

I must tell you that what I remember is vague and in bits and pieces. It’s like when you chop and onion, or something like it. My memories are like the pieces all thrown into the pan. Some of them are too mushy to remember at all, others are just right but it’s all in the wrong order. I don’t know how else to explain it. I recall being surprised at how large my room was. I saw my husband sitting far away on a couch by the window, smiling at me. There was a large bathroom-I could see in it with the door open-and a recliner type chair next to my bed. I remember being struck by how young by nurse was. She was kind, caring and competent. The nurses who care for the DIEP patients have additional training specific to this procedure. I was in good hands. Every hour, around the clock, the nurses had to come in to Doppler the flaps. They would come in and connect the wires to their doppler unit and wait for the sound of the bloodflow. I was always a little nervous until I heard the “woosh woosh” like a baby’s heartbeat on a fetal monitor. I didn’t quite have the same fondness for these flaps, but I was very relieved “ wooshing” sound. The flaps looked so strange, so foreign, and I couldn’t feel a thing. I just hoped they would somehow, someday, feel like my own breasts. The nurses were also very good at making me get up and move. That chair next to the bed was probably 3 feet away. Three feet seemed like a mile when they were making me move. It seemed impossible. Once I was in the chair I didn’t want to get back in the bed. It hurt so much to move. The kindness and caring the nursing staff showed was incredible. I was weak from the surgery and in pain. I had all those drains and wires and such difficulty moving, there was no way I could bathe myself. The nurses bathed me with the caring of a mother for a child. It wasn’t the bath itself, but the caring with which they did it. It wasn’t as if they HAD to. They really wanted to make me feel better. I felt immense gratitude. As a nurse, I only hope to give that same caring to my own patients. I also remember fading out because I had lost too much blood in surgery. I was eventually given a blood transfusion, but prior to that I was really weak. At one point, I was sitting in the chair and I guess I was starting to lose consciousness. I remember a nurse trying to get my attention by snapping her fingers in my face. That must have been right before the transfusion. I also have a recollection of trying to text my friends and family and dropping the phone because I was so out of it before the transfusion. Apparently, my texts to my friends and family were just gibberish, which they made fun of later. It was funny. Somehow, even though I was not completely coherent, I knew it was funny. It wasn’t long after I got the blood that I started to feel better. I was walking the halls and shortly afterward, I was discharged from the hospital. My husband had already left for Michigan. We hadn’t anticipated me being in the hospital so long and he had to get back to the kids. So, my cousin Ben picked me up and brought me home to stay with him for 2 weeks until my follow up appointment with the surgeon.