DIEP Reconstruction Aftermath: 17 Days

Yesterday was Friday, and Friday afternoon means time to see my plastic surgeon. Friday afternoons are when Dr. T sees patients in the clinic that is closer to where I live, and takes about half the time to get to than to UH.

My husband took the kids on a trip, so I was alone yesterday and today, which is fine. Nice, in a way. They left on Thursday night, which meant that if I wanted my husband to drive me to my appointment, it would have to be at UH on a different day. Otherwise, the remaining options were to stick with the Friday afternoon gig and drive myself, or get someone else to take me. The obvious 'someone else' in this case was my mom. I've written before that I've had a little bit of a hard time with my parents since my diagnosis, so I was a little very stressed about this, but it seemed safer than trying to drive myself 130 miles round trip, considering the last time I drove, it was only 12 blocks, and I spent the rest of the day sleeping.

I've also mentioned before that I have a ridiculously low tolerance for stress, so low that after all this crap, I can't even believe I'm alive. My husband once had a pet rabbit that died after literally being scared to death when it accidentally found itself in the same room as his dog, and I think I'm a lot like that weak-hearted rabbit of his. I was so stressed about going to my appointment with my mom that I was nauseous all day (which led to me not eating, which led to me feeling light-headed the whole afternoon) and short of breath. Of course, given my history of DVT, when I'm short of breath, I automatically think PULMONARY EMBOLISM, PULMONARY EMBOLISM! Fortunately, I have enough self-awareness to recognize my hypochondriac tendencies, and know that I get shortness of breath from anxiety, which I prove to myself over and over when I recover immediately after the stressor is removed. Perhaps a cruel twist in this is that one of the classic stress management techniques I've relied upon heavily throughout the years is belly breathing, which is quite painful after you've had your belly sliced open and super-glued shut.

Anyway.

Everything went fine, and I was much better on the way back than I was on the way there.

My main concern right now is my nipple. I mentioned this in my last post, and this panicked e-mail I sent to Dr. T yesterday pretty much sums it up:

So the story of my very sad nipple continues... It has this layer of gooey grossness around it that is half sloughing off, half clinging on, and I am not sure what to do with it. Should I keep it covered and moist or let it dry out or what? Put something on it? Dr. L told me not to pick at it, but it is literally falling off into my clothes and basically leaving a big mess behind. (Underneath the dead stuff, it is bleeding, so I guess that is a good thing?) It is so gross - worse than the drains. I know I have an appointment to see you tomorrow, but I want to do the right thing in the next 24 hours so this horrible thing doesn't contaminate (for lack of a better term) the rest of the tissue. Please advise.

He replied promptly:  

Keep a dry dressing over it. It'll crust over and heal. The fact that there is healthy bleeding tissue under it is great news. How do the breasts feel overall? Any other changes to your skin or swelling?

So on top of worrying about going to the appointment with my mom, I was worried about my nipple being gross, gross, gross. Even though I had prepared Dr. T for the fact that my nipple was gross, and know that as a surgeon, he sees really gross shit all. the. time (not to mention, as my surgeon, has me at my grossest), I felt really self-conscious about just HOW GROSS I was. So I took a shower in the morning and cleaned up the best that I could because seriously. Dignity, folks. (I like to think I have some.) And going to desperate lengths to save my nipple was my idea, not Dr. T's, so I have to admit that the school girl in me was fearing there might be a little bit of I told you so! ahead of me.

All the worry was for naught, though. Dr. T thought my nipple actually looked good, surprisingly good. He kept reassuring me, It's good! Very good! I told him the past week had made me think I should have just let him cut it off like he wanted to, and he said, No! No! It's going to be worth it! in a voice that was the reverse of I told you so! and more like You told me so! I told him I knew I wasn't supposed to be messing around with it, but that I just had to try to clean it up before my appointment - it was THAT GROSS. He thanked me and said I had done a nice job. LOL.

(And wow, I can't believe I just wrote, like, four paragraphs about my nipple. Oh breast cancer, what are you doing to me?!)

Everything else was good. Dr. T almost seemed in awe of his own work as he inspected everything and said, 'Wow, that looks good. Wow, that looks so good!' He did say that part of my transplanted tissue seemed a bit harder than the rest and wanted to see if there was any fluid building up. After trying to locate a Doppler in the clinic, he eventually walked me down the hall to the ultrasound room, assuring me the whole time, 'Everything is good, everything looks great. I just want to make sure there's not fluid build up.' I asked him what it would mean if there were, and he said, 'It'll be okay. Don't worry. Don't worry!'

It was quite a hilarious scene, the ultrasound. The ultrasound tech had no idea what a flap transplant was or what she was supposed to be looking for, and Dr. T had never done an ultrasound before. But eventually he/she/they determined everything was good, and the tech switched to a view that showed blood flow, and instructed Dr. T to move the probe around. I had mostly been closing my eyes because I cannot stand to look at myself, and closing my eyes is apparently some sort of anxiety-ridden escape mechanism. 'Can you see that?' Dr. T asked me. Then, noticing I was trying hard to NOT pay attention, he instructed, 'Look up! Look at the monitor!' Red lines streaked across the monitor. 'That's blood flow,' he said proudly. 'That's the blood feeding the transplant. It's good! It's great!' He was like a kid in a candy store. He was giddy; everything he said had an underlying tone of OMG I cannot believe I did it!

Then he walked me back to the original room, asking me if I had any questions for him. I asked him about the limited range of motion in my arm, and what I should do about it. He told me he intended to contact Dr. L about a good physical therapist in town, and that I should start physical therapy... sometime. After we got back to the room, I figured he would split and that would be that. But I sat down, then he sat down, and talked to me about a few things, including a fundraiser he asked me to attend - BRA Day - promising that 100% of the 'awareness' money would go toward actual research. (But seriously, BRA Day? I tried not to gag while he was telling me about it.)

Eventually, as things were wrapping up, I took a deep breath and said, 'Can you do me a favor?' Of course, he said, Sure. I told him that I wanted him to meet my mom. I knew he was running late, and I knew it was the last thing a doctor running late needed, and as a patient, I knew it was the last thing I'd want a doctor running late to be running even more late over, but yet I asked him anyway. I explained apologetically, 'My mom is afraid of doctors, but I think she'll have a much easier time with all of this if she meets you.' And it's not just that my mom will have a much easier time; if my mom has an easier time, then so will I. He nodded knowingly, making a joke about how he was not a scary person, then asked what my mom's name was, and if it was okay if he went and got her. I told him it was.

So while I got dressed, Dr. T went out and got my mom, and about a minute later, he and my mom were back in the room, and Dr. T poured on the charm. Ha! I really thought he might just introduce himself and say that I was doing well, and my mom could at least have a human face to attach to my stories, but apparently before he got back to the room he told my mom that she had done a great job raising me, because I was fantastic, just fantastic, LOL! Then, back in the room, he launched into a long story about how medicine has changed, how doctors are trained to guide patients and not boss them around. He added that most of the people he went to med school with went into it because they wanted the personal interactions, the type of interaction we were having right now. Then he went on to explain how a lot of the time plastic surgeons are misunderstood, how he had once done heart surgery and organ transplants, but that doing reconstructive surgery for cancer patients and gravely disfigured accident victims was more gratifying. He even has a talk he gives - called Boobs and Butts, hahaha - that actually illustrates how plastic surgery is so much more than just that. Then he volunteered to come down and give a talk to my students, if I wanted (not necessarily the Boobs and Butts talk - anything I wanted). Oh the charm! The wining and dining! Only wait, this is after the fact. No, this guy is just cool. A-M-A-Z-I-N-G. Even after all he has put me through, I feel so lucky to have him in my life.

A funny thing happened during the appointment. Dr. T openly admitted to me that he had not really wanted to do this surgery. He wasn't sure he could do it; it made him nervous - the lack of fat, the possibility of blood clotting. He wanted to give me an implant. ('Tall, lean people look good with implants.') He did the surgery because I made him do it. He said this as he explained the surgery to his medical assistant, who seemed pretty awestruck by the idea that my breast was not actually a breast at all. Dr. T told her, only half-jokingly, 'I didn't think I could do it, but...' 'But I made him,' I finished for him. He grinned, 'Yes, she made me do it.' He said it as if a proud father bragging about having an assertive daughter. Proud of me, proud of himself. In retrospect, I knew this already, but I didn't expect Dr. T would ever admit to it openly. This whole time, I felt like I was reading into things too much, but... I wasn't. I appreciate the openness. It makes him real, human. He has always been this way, but now it is more.

Maybe next time I will ask him if he really did hurt his eye, or if he was just testing me.

Options and Prayers

My parents left for France today. It's sort of weird, but sort of a relief, just because I've got a shit ton of emotions pouring out of me right now, and as I've mentioned before, for some reason, my parents make all of this more difficult to deal with. When I think about it logically, I realize it's because I think this might actually be harder for them than it is for me, and they are not handling it well. And their not handling it well makes it really difficult for me to handle it well. It's sort of hard for me to imagine that they might return to a one-breasted daughter, but in all fairness, I was supposed to be starting radiation right now, not having a mastectomy, and they did wait until they were sure I was not terminal before going forward with their plans. So there you go.

Anyway, I am going up to University Hospital for a consultation tomorrow. I scheduled this a long time ago, right after I discovered I had positive margins from surgery #2, before I met with Dr. J and Dr. M, and seriously thought a second re-excision was a viable option for me. I even posted on the breastcancer.org forum, asking anyone who had had two re-excisions for their thoughts, and got absolutely no response. So this is not something that actually happens in real life. What was that movie in the '90s? With Winona Ryder? Something like Reality Sucks? Or maybe Reality Bites? Yes, I think that's it.

Regardless, I'm actually happy to have this appointment because I am seriously considering the possibility of having my mastectomy with reconstruction at UH. Based on my intense Googling and ferocious blog reading with on vacation, I've pretty much decided that I absolutely do not want an implant. Traditional reconstruction options after a mastectomy are done with an implant - either a saline implant or a silicone implant. This involves a painful process wherein a tissue expander is placed under your pectoralis muscle at the time of mastectomy and, over several months, injected with solution to stretch your chest. Later, another surgery is required for the 'permanent' implant, which is only 'permanent' for, like, 10 years, assuming it doesn't leak, in which case you need to have it replaced right away. It is this a painful process requiring several surgeries, as well as ongoing care of the implant. While I understand this works for many, it is not for me. It just isn't.

This leaves me contemplating the following options:

1. Single mastectomy without reconstruction. The advantages to this are that it would be a relatively easy recovery, and I would probably be able to teach in the fall. The disadvantages are that I would feel like a uniboob FREAK, and unbalanced (both literally and figuratively). It's just hard for me to imagine not being able to get up in the morning and go about my business without feeling like I need to first don my prosthetic boob. I already can't function without putting in contacts in the morning. I have 20/900 vision and a small nose, so glasses with one-inch thick lenses and I don't get along very well, so it's daunting to think about adding a strap-on to my morning ritual. Maybe this is trivial and maybe I will change how I feel about this eventually, but this is what I'm feeling right now. 
2. Double mastectomy without reconstruction. The advantages to this are that I would be more balanced and probably more at ease. Despite the fact that there is no scientific or medical reason to think that I have breast cancer lurking in my right breast, I cannot help but feel this is the case. Even though I think it might be weird to be completely breastless, I think in some ways this might be easier for me than having a single breast. On a practical level, it would certainly be easier. On the other hand, I don't know how I feel about amputating a healthy breast, and the pain that goes along with it. I've written about this here. Emotionally, parting with two breasts seems like double the trauma as parting with just one. Also, none of the doctors I have met with have counseled me to have a double mastectomy, so I am not sure how it would work if I decided that was the route I wanted to go.
3. Single mastectomy with flap reconstruction. Flap reconstruction uses fat from your own body to create a new breast. There are different forms of flap reconstruction; from what I gather, the fat can come from a number of different places. The most 'current' form of reconstruction is DIEP flap reconstruction (do not click on the link if you are squeamish about this sort of thing), which uses fat from your abdomen to create a new breast. The advantages to this are that you do not have an implant, your new breast is 'natural,' and you get to have fat removed from another part of your body. (Who doesn't want this?) The obvious disadvantage is that this is a complex surgery with a pretty horrendous recovery, and the outcome depends on the skill of surgeon. I mean, duh, that's always the case, but with this surgery, it's really, really important to have a good surgeon who is experienced in doing this surgery. It is a lot more complex than traditional reconstruction with an implant, and also involves several steps.  

After much reflection, #3 is my definite top choice. I have been praying this will be an option for me. I know that UH does this procedure, but I am not sure if I can have it done locally. As much as I love Dr. L, if the plastic surgeon she works with can't do this, I need to consider the possibility of doing it elsewhere. Unfortunately, it obviously involves a rather lengthy hospital stay, so having it done at UH, or an even more distant location, would present logistical challenges, but I feel like it would be worth it in the long-term. The other question mark is that I do not have a lot of abdominal fat. It is ironic; for my whole life, I've been blessed with a really flat abdominal region. As I've grown older, I've lamented that I'm starting to get somewhat of a gut, but now, I really, really wish I had a bigger one. (I actually TRIED to gain weight over vacation just so it would increase my chances of being a candidate for this surgery.) The thing is that I am not a super thin person; I am pretty average. It's just that I tend to accumulate fat in my thighs and butt rather than my abdomen. However, apparently these are also candidates for fat donations, especially the buttocks, so I feel like I really need to consider all of my options in terms of where I could possibly have this surgery done, no matter how inconvenient it might be. I don't have huge breasts, and like I said, I'm not a skinny person. I know that I have a B-cup's worth of fat somewhere in my body; I just need a surgeon who will understand how much I DO NOT want an implant, and work with me. I pray I can find one. 

So here are my prayers for tonight: 

Blessings

• I'm thankful to have the opportunity for an appointment at a place that offers cutting-edge care.
• I'm thankful my husband is going to accompany me to the appointment, because driving stresses me out, especially in places with which I'm not super familiar.
• I'm thankful my friend and colleague (about whom I wrote in my last post) is going to watch my daughter early tomorrow morning, and then take her and pick her up from theater camp, so she doesn't have to miss it. 
• I'm thankful the university daycare has drop-in space for my son so that I can have a conversation with the surgeon without a three-year-old in the room, and also have my husband with me. It's like having your cake and eating it, too. :) 

Hopes

• I hope the appointment is informative, and worth our time. I hope I leave knowing much more than I do now.
• I pray with all my heart the surgeon will tell me that I am a candidate for flap reconstruction. 

And now, I am off to take an Ambien. I took one last night, and got six solid hours of sleep, and ohmygosh, it was divine. I am already feeling so much better today than I was a few days ago. I am hoping with all my heart for continued improvement.