Hello, Old Friend

My husband and I have the most hideous reclining love seat you've ever seen. It's the type of furniture you'd expect to find in your grandparents' basement, something you can't even give away for free. It's big and clunky and poorly made, and as my husband explained to Dr. T, It's a color not found in nature. I am not sure what I was thinking when I agreed to buy it, other than I was tired of looking at recliners and love seats and just wanted to be done. I've got even less tolerance for shopping than stress.

However, this reclining love seat and I have come to be good friends. I spent a good deal of time on it after hip surgery and while dealing with DVT, and I slept on it after my mastectomy and for nearly a month after my reconstruction. It has seen me through some difficult times. If I were sentimental, I  would never get rid of it. Fortunately, I'm not.

I wrote that when I saw Dr. T two weeks ago, I was sick. It started off as just laryngitis with a bit of cold-like stuff thrown in, then progressed into a wretched case of sinusitis and bronchitis, with what my husband refers to as 'a marriage-ending cough.' I'm still not 100% right now; I'd put myself right around 80%, which is a lot better than last week, when I was gasping for air, lying down and sleeping any chance that I got, and was convinced that this was the end for me. I figured the cancer had metastasized into my lungs, and that was what it felt like to die. Fortunately, I was wrong.

I don't know whether to be angry at my immune system for failing me, or to feel sorry for it for being so overworked. Either way, I spent most of last week sleeping (or really, trying to sleep, and not actually sleeping) downstairs on my trusty friend, The Hideous Love Seat, because my coughing was keeping my husband awake. I got a total of about 15 hours of sleep in five days, and the one night when I got about four hours, it was because I apparently woke up in the middle of the night and drank 3/4 of the bottle of cough medicine my NP prescribed for me.

There was something eerily strange about being back downstairs in the family room on the love seat. It brought back so many memories, bordering on nostalgia almost. It's hard to imagine feeling nostalgic about such a difficult time in my life, but there was something special about that time. I felt so alone in the family room, but it wasn't a bad type of loneliness. It was true 'me time,' with only myself to worry about, only myself to entertain me, only myself to take care of. This type of absolute calm is pretty much unattainable outside of extreme instances like this.

In Cancer Land, I'm now 'on the other side,' meaning I'm done with active treatment. As I've mentioned before, it is harder than I thought it would be. Anti-climactic at best, depressing at worst. Part of the difficulty is surely because you don't understand why you feel the way that you do, which makes it hard to fix. Most of you is happy that your life is returning to normal, yet a small part of you craves pieces of what you had while in the throes of it all. Then you tell yourself you are crazy, who in their right mind would pine to re-live that experience all over again? But it's not the cancer you want, it's just bits and pieces of the experience. And part of that, for me, was that complete and total 'me time,' when it was just me and the trusty love seat.

Lovely Dr. L

So, after a lot of reflection, I decided to go ahead with revision surgery. It is tentatively planned for December 4th, although I keep playing phone tag with Dr. T's scheduler re. the specifics. Usually when I make a decision like this, I feel good, and don't look back. I'm not a look back type of person.

The only thing is that ever since I made the decision, my stress levels have risen astronomically. I feel unsettled, not right. I don't think it is anything more than the fact that I can simply not face another surgery. I just can't. I thought once I committed I would rally and get geared up for it, but instead, I'm just filled with a horrid feeling of dread and doubt and enough is enough. My insomnia is creeping back, and I feel like crying a lot. My gut tells me this is wrong. I'm sure there are other things going on, too, and this isn't entirely about the surgery, but still. It's definitely not helping.

I regret being so hungover at my last appointment with Dr. T because I feel like I didn't ask the right questions or express the right concerns, and he is not the same on e-mail. I wish I could rewind and have a do-over of my appointment, without taking away the fun of book club the night before, that is ;-). But regardless, I also feel like Dr. T cannot be completely objective when he talks to me about what next. In a way I feel like we can't just have an honest conversation about pros and cons because he's trying so hard to not come across as pushy. Maybe we just know each other too well at this point. It's hard to say. We talk to each other so easily about everything else, but the topic of revision surgery seems to be a sticking point.

My husband is just about as tired of surgery as I am and thinks I should leave well enough alone. At the same time, he is sort of resigned to an 'I want what you want' attitude. I also think he's afraid to suggest that more surgery would be a good idea because that would be like saying the way I am now is not good enough for him, and that can get husbands into a lot of trouble.

So, what should you do when you don't know what to do? Get another opinion. See? I've actually learned something from all of this. So I called and got myself an appointment with Dr. L, because I felt like I was going sort of crazy, and she is my go-to person when I'm going crazy. Fortunately, in some of our e-mail exchanges, she had mentioned that she would love to see the result from the reconstruction, so I had a reason to make an appointment other than 'I need counseling.' It did cross my mind that she might come into the room and be like 'WTF are you doing here?!' but she didn't. In fact, she came in and said, 'Hi cutie! It's so good to see you!' and gave me a hug.

Dr. L thought the reconstruction looked great and that even my nipple looked great. Apparently the humiliated, flattened nipple is as good as it gets for nipple-sparing mastectomies, which is good to know. Like I said before, I'm just grateful to have any nipple at all, but somehow Dr. T led me to believe this was a bad outcome, so it's comforting to know it's normal, and that I never should have expected anything better. Then Dr. L asked me if I would do it again, which was an interesting question. We had a rather profound discussion about breasts and breast reconstruction and the weirdness of all of it. I told her that if I were to go back in time for a do-over, I'd absolutely do it again. It was the right choice this time. But if I have to deal with this again in the future? I don't think so. I told her that I had already questioned Dr. T about what I could do if I ever needed my right breast replaced, and he had told me that you can always use fat off your back. I told her that at a certain point, you have to ask yourself when is enough enough? All this self-mutilation for a feelingless lump of flesh that really serves no purpose? It's... weird.

Dr. L totally got it - all the complex feelings that go into and come out of all of this that are so hard to explain. She said she was curious about my feelings because 'my twin' was coming in this afternoon, and surprisingly had no interest in reconstruction right now. She asked if I would be willing to do peer-to-peer mentoring for any of her patients who were interested in reconstruction, particularly DIEP reconstruction, and I said absolutely. She said they were just starting a new program to connect patients with each other to help women understand the reality of mastectomy and reconstruction - to get the honest truth about what it is like.

Finally, we got to talking about revision surgery. She unequivocally said not to do it. Not yet, anyway. It's not just that I need time to heal and be normal, it's that I might not even need it, if being larger on one side is my chief complaint. She said that in her experience, it can take up to a year for the swelling from the surgery to go down, and she has seen cases where women had one breast reduced, then a year later it was too small, and they had to have more fat put back in. Her suggestion was to wait a minimum of six months and see how I feel next year.

It seems like a no-brainer, when you think of it like that. And when you think of it like that, you also realize that you are making decisions based around insurance and money, and that these might be the wrong decisions, if time is the only thing that can truly answer your question. Then your heart fills with love for this lovely woman who spent half an hour talking you through your complex emotions and giving you good, solid advice over an issue in which she has no vested interest at all.

It's totally clear to me now: I really don't want to do this. Not now, anyway. I need more time, and that's okay. In the large scheme of things, if waiting costs me an extra few thousand dollars, then so be it. I am hoping this isn't just because I think Dr. L is a goddess, and I would jump off a cliff if she told me to. I'm chalking it up to the nature of modern medicine, which is something like those 'choose your own adventure' books I used to read as a kid: patients are charged with forming their own opinions, then shopping around to find a medical professional who agrees with said opinion. After all, if something in my gut hadn't felt off, I never would have made an appointment with Dr. L in the first place. And quite honestly, I was pretty surprised by her strong anti-surgery stance. I mean hello, she is a surgeon.

So, I am going to call the surgery off and spend December healing more and enjoying the holiday season. I just need to call or e-mail Dr. T and let him know. I'm thinking about waiting until the night before, though. You know, just to get even.

Just kidding.

A Photographic Journey

Since I'm not teaching, I'm trying to get a jump start on things that I'm normally not all that good about doing in a timely manner, like working on our Christmas cards. This has involved going through all my photos from the year. Let me just say that there's a dearth of Christmas card worthy photos from May on; however, I do have a lot of selfies I took with my phone. LOL. I decided to make a random compilation of photos that I may add to from time to time. 

It is here: http://39andhip.blogspot.com/p/a-photographic-journey.html

Sweating the Small Stuff

I had book club on Thursday night, and nine of us went through nine bottles of wine. The only reason I'm including this is to set the stage for Friday, when I had to get up and go to physical therapy and then drive 60 miles to go see Dr. T. OMG I was so not in the mood for anything but lying in bed and sleeping. I saw a book club friend at an event on Friday night and she told me, 'Ugh - I think I'm still hung over!' I joked, 'I think I might actually still be drunk.' LOL. Jesus Christ, I have no idea what we were thinking.

Yeah so anyway, needless to say, I was not myself at my appointment with Dr. T. He brought in his laptop to show me pictures from my surgery (my request*) and while I had promised not to throw up, it was a harder promise to keep than I had imagined, haha. It had nothing to do with the pictures, though. ;-)

* At BRA Day, I asked Dr. T why exactly my surgery was so complicated and anxiety-inducing. He said the complicated part was that he had to use such a large area of my abdomen with just one blood vessel. Then he pulled out his phone, as if he were going to show me the pictures, and was like, 'Oh, I don't have the pictures on my phone.' That was sort of a relief, because, uh, that would have been weird.

After we looked at the pictures, which was really an experience, he showed me pictures of his kids playing soccer and we had a long conversation about soccer and sports and how my daughter, ironically, doesn't have an athletic ounce of tissue in her body. Then he went and got his 'chaperone' for my exam.

Everything is fine. It is not great, but it's fine. I knew this. Highlights:

• My nipple made it, but as Dr. T pointed out, 'It's angry.' It's actually more like it is humiliated, in my opinion, which on a normal day I would have pointed out, only due to my wicked hangover I just sat there moaning to myself OMG I want to go hooooooome. My nipple is deflated, flat as a pancake. Whatever. I'm just happy to have a nipple that isn't a tattoo, and I went into the surgery fully expecting that my nipple wouldn't make it, so having one at all is bonus. 
• My nipples are uneven, mainly because my natural breast sags a little and my foob ( = fake boob) does not. 
• My foob is significantly larger than my right boob. We've known this all along, but it didn't prevent a rather humorous exchange in which Dr. T remarked, 'You're bigger on the left side' and I replied, 'Yeah, I know' in a tone that implied Of course I am - YOU made it that way! He smiled, because he understood what I meant, and explained that sometimes some of the tissue doesn't survive, so it is hard to know at the time of surgery how much to put in. As I recall him telling me right after the surgery, it's better to put more tissue in and take it out later than to not put it in and then later be like, 'Sorry, it's in the trash can.' (Yes, he really said that. Sorry, it's in the trash can.) Also, to be fair, my left side swelled quite a bit due to the seroma I developed after my re-excision surgery, so it was bigger by the time I met Dr. T. For all he knew, I had always been that way.
• My foob is very hard. It's like a coconut. Dr. T said it will get softer. I looked at him suspiciously, and he said, 'I promise.' 
• My third rib is very sore, and sticks out. I was convinced Dr. T had broken it when he removed the cartilage to get to my internal thoracic artery, although he assured me at the last appointment that he did not. (Of course.) Dr. T said it wasn't that the rib was actually sticking out more than it should; it just looks more prominent because I have breast tissue over my ribs on my right side, and none on my left. My physical therapist had observed the same, but told me to check with Dr. T anyway, because the rib does hurt a little. 
• I have some lumps in my abdomen around my scar, which Dr. T said are probably scar tissue. Oh, and my belly button is slightly off center, which I did not point out, because... you know, the hangover. Zombie. All that.

I guess the biggest question mark is what, if anything, we are going to do about these things. They are minor things. As Dr. T asked, 'How do you feel when you're in a bra? That's the important thing.' And I feel fine in a bra, normal. I think I might even feel fine in a swim suit. I don't think about the surgery much anymore except at night, when I'm putting cocoa butter on my scars and marveling at how maimed I look. The thought of another surgery is pretty unpalatable to me at this point.

On the other hand, this was a lot to go through for a less-than-perfect end result. Not that the end result was ever going to be perfect, but in a way I feel like what is one more minor surgery in the large scheme of things? After all of this, if my nipples could be even, why wouldn't I want them to be? And since I met my out of pocket maximum with my first surgery, anything I do between now and December 31st is 'free.' Dr. T said this is why he never travels in December - besides the fact that with his kids' soccer schedules, he and his wife never have time to travel for anything other than soccer tournaments.

Dr. T didn't push more surgery on me. We talked about how I am tired of surgery and how my husband is tired of taking care of me and thinks I look fine, and he totally understood. He did say that it would be very minor, outpatient, and we could even do it in the surgery center at the clinic. I wouldn't even have to go to University Hospital. He would just take a little tissue out of my foob, and transplant some fat to the area around my rib to make it softer. 'Your husband just has to drive you, that's all,' he said with a grin. 'It will take me an hour and a half.' In the end, he told me to think about it, talk to my husband, and let him know. Then he added, 'You have my e-mail, and my cell number. E-mail me, call me, whatever.'

In the meantime, Dr. T said I should start massaging my abdominal scar to try to break up some of the scar tissue. He said that I could start stretching my abdomen, but that he still didn't want me doing any exercises like sit-ups until 12 weeks post-op. However, my incisions are completely healed, so it's okay for me to go swimming. (I had asked him about swimming, but didn't tell him I really just want to sit in the hot tub. Same diff. LOL.)

After he left the room, I took forever getting dressed, because of the hangover, and because I had to psych myself up for a 60-mile drive through lots o' traffic. So I was embarrassed when I came out of the room and found that Dr. T was waiting for me. He came down the hall with his laptop and said, 'Wait! I wanted to show you this video.' It was a video of him reattaching blood vessels during surgery - not mine, but, 'It's the exact same thing I did during your surgery.' I had to admit that I had already seen how it was done on a video of a DIEP reconstruction that I watched on OR Live, but it was cute that he wanted to show me. And it is honestly quite mind-boggling, all of it. And when I see in graphic detail everything that my body has been through, I'm in awe of the surgeons who have the ability to do this, and I'm in awe of my body's ability to heal itself.

So.

I am leaning toward just doing one final surgery, but... I don't know. It's sort of like it was with my hip surgery - in the end, I decided to do it because I didn't think I could live with my hip the way it was for the rest of my life. I am satisfied right now, but what if I change my mind in a few years? I should just do it now, while I'm at it. At the same time, five surgeries. FIVE SURGERIES, people! Jesus H, when is enough enough? Ugh.

I'm so tired of making all these damn decisions. Seriously, my parents and brothers are trying to make plans for all of us to meet the week after Christmas, because we were supposed to meet over the summer and didn't because of all this cancer shit. My brother keeps asking for input on where we want to meet, where we want to stay, etc., and I'm like JUST TELL ME WHERE TO BE AND WHEN! Ahhhhhh!

What should I do? Someone just tell me, please.

DIEP Reconstruction Aftermath: 7 Weeks

It's hard to say whether there has been no improvement in the past week, or if my expectations are just getting higher. I still feel good, but not stellar. In some ways, I feel like certain things are getting worse, like itching in my abdominal scar and the pain in the rib that Dr. T messed with. Also, after lots and lots of sitting - first on a road trip involving 20 hours in the car over a period of three days, followed by deciding to go back to work - I've learned a couple things. First, sitting is really bad for my abdominal tightness; I'm pretty sure the tightness is worse than a week ago. Second, my hips (remember my hips?!) are still a problem in a bad way. Oh my God. I don't actually have the energy to whine about this right now, because I've basically spent the past few days in misery, feeling sorry for myself, and I'm done for now. But seriously, oh my God.

So to make a long story short, I'm pretty much where I was a week ago except my hips are killing me.

I'm also still adjusting to taking tamoxifen, which makes me tired if I take it in the morning, and gives me morning sickness if I take it at night. Before experimenting with anti-nausea medications, I decided to try taking the tamoxifen at yet another time. I'm now on day 3 of taking it at 4:30 PM, and that actually seems to be better so far. Minimal fatigue, minimal hot flashes, minimal nausea. According to my husband, I toss the covers off in the middle of the night and take off my pajamas, then get cold and steal the comforter back from him, but as long as I can do it in my sleep, it doesn't bother me. :) Along the same lines, I am thrilled that my insomnia is pretty much gone, or at least back to my pre-cancer levels. I've been about a week without a sleeping pill or melatonin, and I've been sleeping great. I did take half of a hydrocodone for the past few nights, but that was truly because of pain and not cheating for sleeping.

Overall, I feel good, but not great. I'm a little disappointed in the lack of progress because I was hoping to feel STELLAR by now, and I definitely don't. On the upside, I am in a good place emotionally. I at least feel very even-keeled, which is practically a miracle for me. I continue to feel blessed by the goodness that surrounds me, and I have really been trying to focus on that.

DIEP Reconstruction Aftermath: 5 Weeks

Five weeks and feeling good!

Two days into taking tamoxifen, and my world hasn't fallen apart. I am my usual crabby self, and I haven't even had any hot flashes. Knock on wood.

I'm still having occasional shooting pains in my chest and abdomen as I regain feeling, but it's manageable. I also get itchy a lot, but it's manageable, not to mention something I'm used to. (I've been itchy my whole life.) I still have quite a bit of tightness in my abdomen, but it's manageable. I'm upright for the most part for most of the day.

Oh! And the biggest news is that my insomnia is improving in a major way. I've been trying to wean myself off of sleeping pills, and it's going pretty well. I've been sleeping about 5 hours a night and it's AMAZING. It's still not enough, but it's so much better than it was. I'll take it.

Probably the best part of all of this is that I am loving not working. Waaaaaay too much. I'm kind of scared of how much I enjoy doing nothing all day. I knew that work stressed me out in a major way, but OMG, I had no idea just how much. I feel like I need to go back to work just so I don't get used to this level of happiness and stresslessness. (Is that twisted logic? It's like the Seinfeld episode where Jerry and Elaine are arguing over who should get to fly first class, and Jerry's logic is that since Elaine has never flown first class, it's easier for her to fly coach, because she doesn't know anything different. NOW I KNOW DIFFERENT. Ahhhhh!) I hope I don't become permanently lazy.

Interestingly, when I was debating what to do over my work situation, my plastic surgeon wrote me: As far as the recovery, I typically tell folks to anticipate 4-6 weeks to be completely conservative. You are very young and in great shape so should heal very well and much more quickly. I have to say that while I do feel good, I don't feel that good. I'm REALLY GLAD I ignored this, because if I had made plans to go back to work after, like, 3-4 weeks, I'd be one unhappy camper right now.

Anyway, no complaints. Life is good.

DIEP Reconstruction Aftermath: 4 Weeks

Four weeks, wow.

I feel really good. I mean seriously, I feel human and half normal again. Maybe even 3/4 normal. At least 3/4 of my new normal. (God I hate that term already.)

This is not to say there are not still bumps and some major challenges ahead, but I do feel like the third week came with some massive improvements. I can stand up straight for most of the day, my massive back pain has subsided, and my energy is returning. It's as if I woke up one morning and I was just... better. In reality, it probably was more gradual. I keep thinking of how my husband likes to tell everyone that our daughter didn't talk until she was three, then one day she was speaking in full sentences. Ummmmm, no. He's obviously not the one who took her to speech therapy twice a week between the age of 18 months and three years old! But it's true: she did go from being in, like, the second percentile at 18 months to being totally caught up by three. But still. She didn't just wake up normal one day, and I doubt I did, either.

Regardless, there are a lot things going right for me, and I'm so grateful for that. Besides what I already mentioned, here are some things that are good:

• My nipple is well on its way to recovery. Even after Dr. T determined it was viable, it went through various phases of grossness, then bled for a good week or so, with no sign of healing. However, over the past few days, it seems that a new layer of skin is finally growing over the top. Only about 1/3 of it is still bleeding. It looks like the pigment might even return. Dr. T was unsure about this, and told me at my last appointment that we could always tattoo pigment back into it, which gives me the heebie jeebies just to think about. My husband said it was okay if I didn't want to; an albino nipple would be easy to find in the dark. HA! 
• I've been seeing a really great massage therapist that one of my colleagues recommended to me. Now that I can drive again, I've gone to see him three times, and he is fabulous. I realize that getting a massage so often is an activity that is not sustainable (financially, that is), but for now, whatever. If the cancer kills me in a few years, I'd definitely regret not getting massages while I was alive. LOL.
• I've been slowly returning to my normal activities: taking my son to preschool, cooking, doing laundry, etc. Today, I dropped my son off in the morning, went to get a massage, met a friend downtown for lunch, and picked my son up. We just got home, and I feel good, despite the fact that A. We got caught in a seriously scary hailstorm/downpour on the way home, and I actually thought we might die. (Luckily, we got home intact, with the only obvious damage being that part of the underbelly of the car is now dragging on the ground.) and B. I slept three hours last night, from around 11 until 2, and that's it. 

The latter point is a good segue into things that are still a work in progress.

• I'm still having insane insomnia. It was better for a while; I would take a pain pill at night, because my pain does tend to get bad at night, AND it would help me sleep. For about a week, I was able to get away with the hydrocodone only, or on some nights the hydrocodone + melatonin. However, the past few days, my pain has been minimal, even by the end of the day, so I decided to ditch the hydrocodone, which led me back to needing a sleeping pill. I can't decide which dependency is worse - the hydrocodone or the temazepam. LOL. Last night, I went back to the hydrocodone + melatonin, and woke up at 2 AM. Of course, I started thinking about having to start tamoxifen, which led my stress levels to spike, and I was never able to get back to sleep. Aaaaaargh. I joke that I am sleep training. 
• At my last appointment, Dr. T brought up the possibility of doing a second, revision surgery to add fat to the reconstructed breast to make it softer. I do have to say it is rather rigid; I call it my coconut boob. At the same time, I am so over surgery right now. There is really no rush, but Dr. T suggested doing it before the end of the year - while it's 'free.' (I'm pretty sure we met my individual out-of-pocket maximum of $3,500 with the first surgery.) Part of me just wants to leave well enough alone, but the other part of me thinks that if I went through all of this, maybe I should go the extra bit and let him polish his results. After all, if my goal was simply to be acceptable-looking in everyday clothes, I could have just gone with no reconstruction and used a prosthetic. So... it's another thing to think about. 

Regardless, things are good! Really good. I am happy. :) 

DIEP Reconstruction Aftermath: 24 Days

It is Friday, so I feel like I should be making the trek up to the University Health Clinic to see Dr. T. However, at my last appointment, he said things looked good enough that I do not need to go back for another month, which is actually going to end up being more like six weeks. So hopefully he meant it when he said everything looks good, and complications this far out from surgery are rare. My fingers are crossed.

At any rate, today was a big day for me (insert slightly sarcastic tone): I ran errands! First I went to the post office to mail a package, then I went to the pharmacy to finally have my prescription for tamoxifen filled. While I was waiting, I went to the liquor store and bought three bottles of wine, a bottle of sake, and a bottle of port, because we are having friends over tonight and I was indecisive about what we should drink. I'm pretty sure that carrying these out to the car violated my lifting restrictions, but sometimes sacrifices have to made in the name of alcohol. LOL.

So now, I've got a bottle of tamoxifen sitting on my kitchen table, and I just need to grow some balls boobs courage and start taking it already. Ugh, ugh, ugh! Have I mentioned that I fucking hate cancer?

But the good news is that it feels really good to be getting back into the swing of things. And while running errands is not particularly exciting, it is exciting to not feel trapped inside the house anymore. Until today, the most I had done was drive my son to preschool and drive myself to go get a massage. Granted, I don't see any long trips to the mall in my near future, but it's nice to know short trips are completely do-able (and I almost never go to the mall anyway).

All in all, this is far less down time than I had imagined - or at least far less complete, lying-on-the-couch down time. Heck, I ordered a whole season of True Detective and have only watched three episodes. I feel good enough that I want to start setting some goals to get myself through the end of the year, and start laying the foundation for my 'new normal.'

DIEP Reconstruction Aftermath: 3 Weeks

On the one hand, I cannot believe it has been three weeks already. I feel like I've lost three weeks of my life, just sleeping and being useless and a drain on everyone around me. On the other hand, I cannot believe it has only been three weeks, and I'm sort of in awe over the body's ability to heal itself. This whole surgery is mind-boggling to me, quite honestly. And because I: a. have a lot of time on my hands; b. am a science/medicine nerd; and c. am a glutton for punishment, I Googled videos of this reconstruction yesterday. This one was amazing, and very enlightening: http://diepflapvideo.com. It is a video of the actual surgery being done - very graphic. After watching the whole video, start to finish, I am sort of in awe of how good I feel considering everything my poor body has gone through, and how much healing it has to do. The blood loss alone is significant! I'm also equally in awe of the amount of education, training, and skill it takes to do this surgery successfully. Even after gaining a good understanding of how it works, my mind is still boggled that it can actually be done.

I think I am at that point in recovery where you have to make a conscious effort to stay calm and keep perspective. I actually feel worse on a lot of days than I have in the past, but that's because I'm doing a lot more, starting to resume normal activities. I'm still sleeping downstairs in the recliner, but I'm no longer spending my days in it. I am back in our home office, at my desk, when I use the computer. I've been going outside regularly, picking what's left in my garden, cooking for myself, loading the dishwasher. I occasionally drive a few blocks but still don't really like it, as my left arm is very stiff. I picked my daughter up after school yesterday and debated whether I could walk there or not (2.5 blocks). I did, though I regretted it when I got there, and I must have looked awful, because several parents offered to give us a ride home. I took them up on it.

Another point of frustration that requires perspective is that my pain levels don't seem to be improving much, but I think that gets back to doing more, taking fewer pain meds, AND regaining some feeling where I previously had none. I have a constant, intense ache where, according to Dr. T, he had to remove cartilage from my rib to get to my blood vessels (no biggie, just a cracked rib), and I have weird pains in my abdomen as some of the nerves repair. I just need to remember that I was told to take six weeks off of work, and this is just the halfway point, so I shouldn't expect to feel stellar right now. Also, even though I could start working after six weeks, I knew it could be a full year before I felt 'normal' again - or at least 'the new normal.' One thing I am certain of is that I am so very grateful to have the entire semester off. I'd be in a very different place right now if I were returning to work in three weeks.

I have to just keep on keeping on. My goal for today is to move my stuff back upstairs, to break down my recliner camp. Three weeks seems like a good time to try to move back into my normal bed. It is also time for me to start cooking again. For four weeks now, someone has brought us something to eat, every night. That's four weeks in a row; I'm not even counting the two surgeries before this or the shell-shocked time around my initial diagnosis when friends also fed us. This has been amazing. A-M-A-Z-I-N-G. At the same time, just like weaning off pain meds, getting back into the swing of things will require weaning off help, so I told Admiral and my 'food posse' that we were ready to start fending for ourselves again. I have a feeling this might involve lots of take-out and rotisserie chickens for a while, but, like everything else, one baby step of progress is a victory.

Overall, I'm happy with where I am, and I'm happy as I think about the future - both the immediate and the more distant. I find myself planning again, looking forward. And that, in itself is a big step.

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.

DIEP Reconstruction Aftermath: 2 Weeks

So, it has been two weeks since my reconstruction, three since my mastectomy. It's hard for me to believe the surgery was only two weeks ago and that it was only a week and half ago that I left the hospital. I'm a world away from that now. I think I'm doing pretty well considering that two weeks ago I had my abdomen and chest sliced open, and a chunk of my abdomen stuffed into the space where my breast used to be.

At the risk of sounding overly optimistic, I will say that I feel like I have turned a corner. Just how many more corners there are between me and Fully Functional I cannot say. Here's how I'm feeling two weeks after:

• I'm having moderate pain where my incisions are. Most of is just tightness and discomfort, with random shooting pains every few minutes or so. But overall it's manageable. I've been taking ibuprofen about twice a day, and one oxycodone at the end of the day. I could probably do without the oxy, but I am very sore at the end of the day, and it helps take the edge off, and helps me sleep. 
• I also have this strategy of slowly stretching myself back to normal in my sleep, while I have the help of pharmaceuticals and unconsciousness. 
• Unfortunately, since getting home from the hospital, I've relied heavily on sleeping pills to sleep. I've been taking temazepam every night. My one attempt to sleep without it was a miserable fail. 
• As for straightening back out, when I'm at my best, I'm somewhere between 160 and 170 degrees when I'm standing up. When I'm at my worst, I'm still using my walker (though that is rare, thank goodness). 
• These improvements have led to improvements in my back pain. Although my back is still giving me a lot of grief, it is nothing like it was a week ago. 
• My days mostly consist of reading and messing around on the computer, with a nap while watching something stupid on TV in the afternoon. I've been showering every other day, and while that is something I really look forward to, it zaps me of energy. Things like going upstairs, getting dressed, and going to the kitchen to find something to eat for lunch make me ridiculously tired. But hey, I can do them! That's a start.
• I'm really glad I chopped my hair off pre-mastectomy.
• I drove once, yesterday, and tonight I went upstairs for the first time since my mastectomy, to read to the kids before bedtime. I've been sleeping downstairs in our family room, on our recliner, and my kids have been bringing books downstairs for me to read to them. It felt good to add going upstairs for bedtime to my very short of list of Things I Can Do.  
• I must say that my husband's hideous love seat/recliner is one of my favorite things right now. That, and the shower chair. Mastectomy must-haves, in my opinion. 
• I'm regaining some feeling in my chest and abdomen, but not much. 
• I have quite a bit of tightness in my chest and limited mobility in left arm, but I'm working to improve it with a self-designed exercise regimen. I can lift my arm above my head, but not easily. It doesn't really hurt, but it feels really uncomfortable and my arm feels weak.
• My nipple. is. disgusting. I would provide details, but I get sick just thinking about it, so my guess is you would get sick if I told you about it. It's so gross I sent a panicky e-mail to Dr. L this afternoon. Being the dear that she is, she promptly replied, telling me, 'It will heal from the bottom up, then the scab will fall off and, viola, a new nipple will appear! Important not to pick at it though...' Enough said.

My husband is taking my kids on a trip this weekend - leaving Thursday and returning Saturday. I feel confident that I will be fine on my own, with help from my parents and friends. I continue to be in awe by the goodness and generosity of the people who surround me, and I am so very thankful. I pray it will continue, and that I will continue to heal both physically and emotionally.

DIEP Reconstruction Aftermath: 10 Days

So basically I have had an awesome 24 hours. I feel... happy.

This happy spell interrupts a long week of blah. Not really unhappiness, just a lot of discomfort, restlessness, and fatigue. Oh my God, the fatigue.

Two days ago, Wednesday, was probably my worst day of fatigue, and I pretty much slept the whole day. Yesterday, I felt very blah, and probably would have spent the day sleeping, except that I had arranged to have a massage therapist come to my house to try to help me with my back pain. Lesson learned: massage therapists that make house calls are used to massaging house-bound, 90-year-olds. She was useless, and it's among the worst $65s I've ever spent, but whatever. It was worth a try.

Anyway, I was pretty wiped out all afternoon, then my husband had a meeting at 6:00, which meant I was in charge of the kids during dinnertime. This is the most responsibility I've had in a long time, which sounds pathetic, but like I said earlier, Oh my God, the fatigue.

A little before 6:00, one of my friends from my wine, oops I mean book club ;-) came by with dinner for the family. I was a little bummed because there was a book club meeting, but there was just no way I could make it, even though it was happening less than a block away. Oh my God, the fatigue. And anyway, I had the kids, I was only half dressed, I had these gross drains hanging out of me, yada yada yada. But then my friend suggested that instead of meeting at her house, everyone could just come over to my house, if I wanted the company. Yes, please.

I would detail the events of the evening, except that at some time close to 11 PM, chock full of inhibition-reducing substances, those of us who remained made a pact that what happens in Waning's back yard stays in Waning's back yard. Needless to say, fun times were had, and it was good for the spirit. I think one of the hard things about this (among many), is trying to find a balance between resting and languishing. I have now learned that sometimes pushing through the fatigue is a good thing.

I woke up this morning with a little bit of fog on my brain, but had to quickly sweep it away to tend to the kids while my husband had back-to-back teleconferences (my daughter did not have school today, and my son's preschool does not start until 8 AM, so my husband couldn't get him there before the teleconferences), then shower, then get dressed in real clothes, then make myself presentable to go out in public. For today was a big day: my first post-hospital post-op appointment with Dr. T.

I don't think I've ever been so excited for a doctor's appointment before, because I was so hoping that he would take out the God-awful drains, which are not just gross, but also extremely uncomfortable (and at times painful). And he did, and that alone made it an awesome day, but the rest of the visit was good as well. I think we were both just so much more relaxed than we have been, with the tension of Is this going to work? behind us.

Dr. T started off by asking me how I felt - that dreaded question I never know how to answer these days. I told him I felt okay, but Oh my God, the fatigue. He told me that was normal, then went into way too much detail about how he had cut into my chest, done 'muscle work' with my chest muscles, and taken out pretty much all (as in ALL) of the fat in my abdomen. I must have started to look grossed out at one point, because he then said, 'The point is that you see the scars on the outside, and they're pretty big. But it's nothing compared to the surface area on the inside that is trying to repair.' He said healing would take the same amount of energy as running a marathon, so massive amounts of fatigue for several more weeks should be expected.

When Dr. T asked about how much fluid was coming from the drains and I told him it was less than 30 CCs per day for all three drains, he said, 'Okay, we can definitely rip them out then!' Then he gave me sort of a mischievous grin and said, 'I mean... we can gently pull them out.' LOL. I had heard mixed things about getting the drains out, ranging from It doesn't hurt at all to It was the most painful thing I've ever felt, and I've had 10 kids with no meds. (This, by the way, is one of the more annoying things about discussing various procedures; any time anyone tells you something hurts, it is inevitably followed by a resume of that person's proven record of high pain tolerance.) Needless to say, while anxious to have the drains removed, I was also anxious about how much it would hurt. (For the record, I also begged for an epidural when my daughter was born.) Now that I've experienced drain removal for myself, I can say that it really didn't hurt, although it did hurt a little when he pulled the stitches around the drains out, and a little bit afterward, because now I have three holes in me, which should close up in a few days, according to Dr. T. It's actually rather amazing it didn't hurt, considering that for each drain, there were about 4 inches of drain actually inside my body. Dr. T also removed the wire that ran through the flap transplant, and that, too, was weird and uncomfortable but didn't hurt, probably because I have little to no sensation in my fake breast, and likely never will. I guess there are some advantages to numbness. I saw Dr. T pull out one wire, then go back in and pull out another. 'There were two wires?' I asked. 'No,' he replied, somewhat sheepishly. 'I just broke the one in half.' When it was all done, I felt slightly nauseous, which is apparently normal, and I regretted that I had eaten sushi in the car on the to the appointment. Fortunately, the feeling of wanting to throw up passed within a few minutes.

Other highlights:

• I've been worried about my nipple, despite the fact that everything seemed so positive in the hospital. It seems that she has taken a turn for the worse, poor thing. The past few days, I've been convinced that it was farewell nipple time, and even Googled pictures of nipple necrosis to see what it looks like, to see if this is what's happening to me. (All Dr. T had said is, 'It's not pretty,' and I definitely do not recommend Googling this on a full stomach. LOL.) However, I was pleasantly surprised when Dr. T looked at my nipple and declared, 'It's alive!' 'It's going to make it?' I asked. 'It did make it,' he replied. 'But it looks so sad,' I said, making sure he wasn't being overly optimistic. He gave a knowing little laugh and said that yes, my nipple was obviously very sad, and would probably never be a normal nipple again, but... it was alive, and had a better chance of recovery since I didn't have an implant. And that is honestly fine with me. Nipples are a nuisance, unless you are feeding a child, which I won't be, ever again. At the same time, not having a nipple is weird, without a doubt. I've been debating whether or not I'd put myself through the trouble of nipple reconstruction for the recreation of an unwanted body part, and I'm glad I don't have to think about it now. 
• I told Dr. T about his fellow, who, the day after my surgery, visited me, and told me in a very animated way that she was having a heart attack during my surgery because, 'You're so skinny! I didn't think we were going to be able to close you back up. I asked Dr. T, How are we going to close her back up?! and he said, I don't know yet!' (Talk about something you are happy you are hearing after the fact.) Interestingly, he didn't deny any of this. He just smiled with his heart-warming and confident, semi-cocky smile, and said, 'Dr. Lu is a new fellow, so she had never seen anything like this before. When I showed her the reconnected blood vessel feeding all that tissue, she couldn't believe it.' Then he admitted that sewing me shut was difficult, and started to detail how they had stretched my skin to do so, but I must have looked away, because then he stopped. It's funny how much easier it is for me to hear the nitty gritty details on a molecular level than on a surgical level. Not that it bothers me that much; I just don't crave the details the way I do with my medical oncologist. The whole idea of the surgery boggles my mind, to be honest, whereas I understand cells. 
• Since the surgery, I've had to wear a binder around my abdomen. It's a lot like a corset. It is uncomfortable, but also sort of a comfort at the same time. It's very thick, and a little too big for me. (Can't they make these things in different sizes? Seriously.) I need to keep it from compressing my boobs, but if I pull it down, it goes over my hips, which is uncomfortable and creates discordance with my underwear. (TMI, sorry!) At the same time, it's good 'protection' for my sliced-up abdomen. I asked Dr. T how much longer I had to wear it, and he said three weeks (!!!), to keep fluid from building up in my abdomen. Ugh! At least it is a lot more comfortable now that my drains are out. It was very difficult adjusting it without pulling on at least one of the three drains, which hurts.
• I asked Dr. T when I could start straightening out again, and he basically said to let pain be my guide. Then he looked at me suspiciously and said, 'Don't go crazy, though.'

Overall, fatigue and back pain are my biggest problems right now. My chest and abdomen are mostly numb, so I have little pain there. Most of the discomfort was from the drains, plus random itchiness and occasionally shooting pains. A lot of those pains were where the wire was, though, so I hope that will improve. All in all, I'm feeling very positive and looking forward to my continued healing.

DIEP Reconstruction Aftermath

There are so many things I want to write, so much going through my head. I'm still in a little bit of a a major haze from my pain meds, and I'm afraid that I've already lost so much of what I wanted to say. The days since surgery have morphed into one big, fuzzy, memory, and things that happened have been replaced with my mind's interpretation of what happened. Solid memories have broken apart, leaving behind bits and pieces that I'm trying to put back together and place in the right spot.

This has been an intense experience, probably the most intense experience of my life so far, and I want to have a record of it, something to look back on years from now, something that maybe one day I'll be proud of having survived. It's hard to know where to start, so I'll just start. I'll start with the major details and work my way down to the minutia, down to the pre-op nurse who told me about a Thai woman she knew who died of breast cancer right before I went in for surgery, to waking up with a tube still down my throat, to the fellow who told me she was having a heart attack during my surgery because she had no idea how they were going to close me back up.

My surgery was on Tuesday, September 8th. I had a check-in time of 6:30 AM at University Hospital, so we left the house a little after 5:00. I was shocked how bad the traffic was, even at 5 AM. I figured the traffic would be bad around 6 AM, but that we would almost be there by that time. As it turns out, we got to UH right at 6:30, which needless to say, stressed me out a bit. What if, after all of this, we got into a car accident on the way? Or what if Dr. T got into an accident? The big day had finally come, again, and yet there were so many danger-filled miles between me and the surgery. In a panic, I texted Dr. T in traffic to tell him to drive safely. He already knows I'm neurotic, so what is one more neurotic text in the large ocean of my neuroses?

Pre-op was full of the usual - different people with different titles asking you to tell them your name and birth date and answer the same questions over and over. The nurse. The fellow. The nurse anesthetist. The anesthesiologist. A parade of others. And finally, Dr. T, who didn't come in until around 8 AM, though his fellow assured me he was already at the hospital, seeing patients. Still, I felt better when I saw him with my own eyes.

Dr. T seemed different than usual - less sure of himself, less confident. Nervous, almost. But maybe it was me who was different - less sure of my choice, less confident in him. A nervous wreck, for sure. As he marked me up, he was all business, working quietly, efficiently, commenting that my nipple looked better but reminding me that it might not make it, asking me for my consent for an implant if the flap transplant didn't work. Telling me I'd look good with an implant, that I could change my mind if I wanted. He was supposed to be reassuring me, telling me that everything was going to be okay, only he wasn't. He seemed resigned. I felt as though, after all this, I was going to wake up with an implant and no nipple, something I should have done months ago, if that was my fate.

There were a few moments that broke the unspoken tension between us. I joked that I had had a sit-down conversation with my nipple, and he replied, 'We need to know what you said to her.' I told him that I had been trying to gain weight - and my husband corroborated this - then Dr. T tried pinching my fat, and it hurt so bad it was practically comical. Sorry, but I don't think it worked. You're just so thin. At some point, his cell phone starting dinging and he barked, 'Who's texting me? Go away! I'm busy!' Then added, 'It's probably my wife, telling me I forgot something.'

And then, at the end, he took my hand in his and looked me in the eye. It's as if he wanted to tell me it was going to be okay, but he couldn't say it because he wasn't sure it was going to be. So he just took my hand, waiting to see what I would do. I squeezed his hand and put my other hand around his, then he put his other hand over mine, and we shared a quiet moment. At that point, I knew at the very least he was going to try his hardest to do his best work for me. It was the best reassurance he could give me.

And then off I went.

I woke up almost 11 hours later, sometime around 7 PM, or so I'm told. 11 hours. Dr. T had originally said this was an 8-hour surgery, although he had done it in as little as 5. It took him 9 1/2 hours. 9 1/2 hours. Everything went as well as it could have, he said. It just took him a very long time. When he went out to talk to my husband, he was understandably very tired, and very hungry.

I woke up on and off after the surgery, but those memories are all cloudy. I remember waking up with the tube down my throat, twice, and closing my eyes and drifting off again. I remember waking up with searing pain in my right arm, of all places. I remember the effects of the anesthesia exaggerating everything. I was tilted on my side, but was convinced I was falling off a cliff. I was in a panic, grabbing onto things for dear life. Everything seemed as if it was in slow motion; seconds seemed like minutes and minutes like hours.

When I fully woke up, I was in the ICU, and it was almost 9 PM. Nonetheless, Dr. T came by at some point and talked to me, telling me that everything was good. I don't remember exactly what he said or what I said, if anything. I'm not even sure if I could talk at that point. But I do remember taking his hand, again, and him telling me light heartedly, 'Don't thank me until you're home.'

The main reason that you have to be in the ICU for up to 48 hours post-surgery is so they can monitor the blood flow to the transplanted tissue. The surgeon places a wire inside your breast, which is then attached to a Doppler, so you have to/get to lie there and listen to the blood flow 24/7. And it is loud. You don't know whether to love it or hate it. You love it because you want to hear it; if the Doppler goes silent, it means the blood flow is ceasing, and your tissue will die. You hate it because it is loud and you can't talk because you just spent ten hours with a tube down your throat and no one can hear your hoarse whisper. You can't even watch TV because you can't hear the TV over the WHOOSH-WHOOSH-WHOOSHING. At first you can't sleep, because it's so weird, but eventually your brain turns it into white noise and you can't sleep without it. Every hour, sometimes more than every hour, someone comes in and uses another probe to check the deeper tissue. The nurses did hourly checks, a gaggle of residents came in at various times throughout the day to do their own checks, and Dr. Lu, a fellow, came in at 6 AM on the dot every morning for her own check.

The first 24 hours after the surgery were the longest of my life. The slowing effects of the anesthesia combined with not being able to sleep or move combined with extreme hunger and thirst were practically unbearable. Because there is a possibility of the blood supply in the transplanted tissue not 'taking,' you have to be ready to go back into surgery until they are positive the blood supply is well established. Apparently there is a good chance of saving the flap if surgery occurs immediately after the blood flow starts to diminish. So I could not eat or even sip water until around 2 PM the next day. I knew I would be closely monitored after surgery, but I did not know I would need to be ready for another for so long; this was a very unexpected and unpleasant surprise. Fortunately, I had on-demand morphine for pain relief, and whatever they pumped me with post-surgery had still not worn off, so despite the fact that the hours seemed interminable, I wasn't in a lot of pain. It was actually a fairly surreal experience. I remember feeling pretty good, I remember feeling pretty horrible, I remember a parade of people checking on me constantly, I remember my husband being there, my parents being there, and an old colleague coming by to visit late at night. I remember trying every station on Pandora to try to sleep, and failing. I remember a caring nurse finally giving me an Ambien on Wednesday night, and I remember telling her about my Ambien zombie story in my barely-above-a-whisper post-surgery voice.

Although Wednesday was the longest day post-surgery, Thursday was the worst day. Too much happened on Thursday. My bed rest orders were lifted, and getting up and out of bed multiple times became mandatory once they took my catheter out. And to top it off, they also took away the pain pump. Not that I didn't want to get out of bed, and the catheter, while nice, had grown slightly uncomfortable as the fog began to lift. But it was a lot all at once. From zero to sixty in five. And getting out of bed when you have a gazillion things coming out of you, going into you, and wrapped around you, is no simple task. (I was attached to at least four EKG leads, I had an IV in my right arm and one in my right foot, I had a blood pressure cuff on my left leg, compression devices on both legs to prevent DVT, a pulse oximeter attached to my right index finger, a wire coming out of my chest that was attached to a Doppler, and three drains - one from my breast and two from my abdomen.) Sometime in the evening, a searing pain in my back started from walking all hunched over. It was so bad, I couldn't lift my feet off the ground. I was shuffling along like a 90-year-old, afraid my legs might give out. While I was in the bathroom trying to brush my teeth at night, I absolutely lost it. I don't think it was just the pain, it was everything. I started bawling uncontrollably and could not stop. The night nurse - my favorite - fed me two oxycodones and made a lot of phone calls, and eventually gave me something through my IV that calmed me down and knocked me out for a few hours. When I woke up again around 11 PM, I dragged myself back to the bathroom again, then took an Ambien, and slept until it was time for my morning labs and heparin shot at 4 AM.

The highlight of Thursday was a visit from Dr. T sometime in the afternoon. I had just managed to doze off when I heard a voice in my dream saying, 'I LOVE that sound!' In my dream, that statement made no sense, so I groggily aroused, rubbed my eyes, and reached for my glasses. Dr. T was sitting next to me, smiling. He was not wearing scrubs, but a suit. The sound to which he was referring was the WHOOSH-WHOOSH-WHOOSHING of the Doppler, the blood flowing through the transplanted tissue.

'I came to see you yesterday, but you were asleep,' he said. 'Dead to the world. I tried to wake you up, but I couldn't. You had your headphones on, so I don't think you could hear me.' He seemed apologetic. He was his old self - confident, self-assured. The doctor I had fallen in love with back in July when I started down this difficult path. He said that everything looked great, then he pushed on my nipple and commented, 'I think it's going to make it!'

After a bit, he looked at me and said, 'I'm really glad we did this.' He said it in somewhat of a self-congratulatory manner, as if he had surprised even himself. I'm really glad we did this. That's what he said, but what he really seemed to mean was I'm really glad you made me do this. I'm really glad you believed I could do this. It's sort of like in sports, when the underdog upsets the champion, like Roberta Vinci beating Serena Williams in the U.S. Open. It is surprising, but yet completely reasonable. After all, even if you're the underdog, you don't make it to the U.S. Open unless you have some mad skills. You train to win, and you know you can - it's why you play - yet there is still elation and an element of surprise when you actually do. Dr. T had confidence in his skills, and I had confidence in his skills, yet there was still elation and some surprise that everything worked out.

Sometime on Thursday, I was technically released from the ICU, only I stayed there physically because they didn't have a bed for me 'on the floor,' which I gather means the non-ICU part of the hospital. I was happy to stay. I had excellent nurses in the ICU, and particularly loved the night nurse, whom I had three nights in a row (Tuesday, Wednesday, and Thursday). After my meltdown on Thursday night, she was vigilant about giving me pain medications regularly. Tylenol and oxycodone every four hours staggered with ibuprofen every four hours - so I was taking something every two hours. By Friday morning, I felt so much better and had my pain back under control. I was able to go on a long walk, with a walker, around the entire ICU. Fortunately, I was bent over and concentrating so hard on trying to make my legs move that I couldn't look around at all, because I'm sure if I had been able to I would have been weirded out being in the presence of so many people in such grave condition, so close to dying. Needless to say, the ICU is not a merry place.

Around noon on Friday, Dr. T came by with one of his residents, which was a pleasant surprise. When I saw him last Friday for my pre-op consult, it was at a clinic in a suburb south of town. He told me then that he tried not schedule anything at UH on Fridays because the traffic between UH and the suburban clinic is terrible. Plus, he lives in the suburb where the clinic is.

'Howdy, stranger,' he said as he strode in. He didn't check anything this time, just made small talk. When he asked me how I was feeling, I couldn't quite figure out how to respond, and finally said with a laugh, 'Pretty crappy, actually!' He said that was normal, of course. Then he said that aside from the fact that I felt crappy, I was good enough to go home when I felt like it. He added that some women want to go home right away, day four, and others want to stay through day seven. Want to stay, not need to stay. 'You know why some women want to stay seven days?' he asked. 'They say, No way I'm going home to my kids!' He didn't say this judgmentally, and made it clear that it was very much my choice. I hadn't really considered the kid factor before. While it's notoriously difficult to get rest in the hospital, especially in the ICU I now know, it is perhaps more peaceful than being at home with young children. Six of one, half dozen of the other.

Eventually Dr. T asked me who my plastic surgeon was. I looked at him, confused. Then he laughed at the apparent stupidity of his own question and clarified, 'I mean I know I am, but I mean the one at home, the one who did your surgery last week.' I told him who it was, and he said, 'He did a really nice job. Where he put the tissue expander, it helped me a lot. I want to send him a note to let him know. I'm also going to write your surgical oncologist.' It was high praise coming from Dr. T, who made me consult with UH's top hematologist before agreeing to do my surgery. Not just any hematologist would do; it had to be a Top Hematologist. Country doctors, living up to his high standards. Impressive.

On Friday afternoon, I moved to 'the floor,' or out of the ICU. The new room was about the same as the old room, only there was a shared bathroom with the room next to mine, which I think was my main motivation for wanting to come home as soon as possible, kids and all. Of course, you have to lock both doors when you're in the bathroom, to avoid the possibility of being intruded upon while you're doing your business. But then you are supposed to UNLOCK the doors, otherwise your bathroom-mate gets locked out, which happened to me every. freaking. time. Which was extremely annoying. By the end of my stay, I was unhooked from enough machines that I could get myself out of bed and to the bathroom with no help, except that every time I would traipse 15 feet to the bathroom, pushing my Doppler with me, find it locked, drag myself back to the bed, push my call button, and wait for the CNA to come unlock the bathroom for me. Eventually I just pushed the call button before heading out, which I'm sure was as annoying for them as it was for me, since not only did I not need help, I also really didn't want someone escorting me to the bathroom.

Late Saturday morning, one of the residents from the gaggle of Dr. T's 'surgical team' came by to see me. She said she had completed all of the paperwork necessary for me to leave, so I could leave whenever I wanted. I wasn't actually mentally prepared to leave so soon, probably because just 48 hours before this, I was a complete invalid, getting a sponge bath, with nurses having to use all the special maneuvers in their arsenal just to roll me a few inches to wash my butt for me. But when I really thought about it, I saw no real reason to NOT go home. My pain was under control, I wasn't getting anything through my IV, and I was basically just sitting around for hours on end, which I can do at home. In fact, after four surgeries in the past four months, I pretty much have sitting around at home down to an art. I probably would have been more inclined to stay until Sunday if it hadn't been for the maddening bathroom situation and the fact that I was about an hour and a half from home, which definitely presented logistical challenges for my husband. Since he was coming with the kids that afternoon, it seemed like as good a time as any to jump ship.

So my husband got there with the kids around 1 PM, and I told him I wanted to leave. And once I made up mind that I wanted to leave, it couldn't happen fast enough. However, I know from experience that it takes at least several hours to actually check out of the hospital, so I told my husband that he could proceed with his original plan of taking my daughter to the American Girl store, and that by the time they got back, I might be ready to go. As it turns out, the timing was about right. They left, I ordered lunch, watched the U.S. Open, waited for one of the residents from the gaggle to come snip my wire so I could be liberated from the Doppler (although the wire is still in my chest), waited for my final educational session with the nurse, waited for my prescription for oxycodone to be filled, then waited for someone to come with a wheelchair and transport me down 10 floors and out of the building.

We left around 4 and got home around 6, and as much as I was second-guessing my decision, or at least feeling like I was making the decision for the wrong reason (a bathroom? really?), I was so happy to be home. So much happier than I expected. With a few exceptions, I pretty much have nothing but good things to say about University Hospital. The care was exceptional, I had my own very nice room, and even the food was good - and I mean legitimately good. Not just good for hospital food good. Of course, I had a limited appetite, and when I was in the ICU I was only allowed pureed food, so I never got to try the steak or the salmon, but the soups and salads were on par with something like Panera Bread. The point is that I wasn't dying to leave as I have been in the past. There have been times when my kids have been hospitalized and the whole experience was so unpleasant that I completely understand why sometimes people with serious illnesses reach a point where they say Fuck it, take me home! knowing full well that going home means a 100% chance of dying within a few days. Yet even in the most ideal of hospital situations, there is still something very unsettling, something very ick, about being there that you don't even realize until you aren't there anymore.

Being at home has been nice, and surprisingly relaxing. Being around my kids has actually done a world of good for my spirit. My nine-year-old is very independent, helpful even. My four-year-old has surprised me with his understanding of what I can and cannot do, and has had shockingly exemplary behavior. He will play on his own, bringing things to show me, playing with his blocks next the recliner where I spend most of my time, sometimes bringing me books to read to him. I didn't realize how much I missed him and his constant chatter until it was back.

It has now been six days since the surgery, and I feel about as good as can be expected, with the exception of my back. Trying to walk without standing up straight has put an enormous amount of strain on my already bad back, to the extent that getting up and going to the bathroom pretty much uses up my daily pain quota. Fortunately, it is only walking that causes the pain, and I have to believe that when I am able to straighten out completely - within the next month or so - this issue with resolve. Unfortunately this means that I cannot get up and walk around as much as I would like, but I'm trying not to beat myself up about this. After all, some people without back problems and big hunks of flesh cut out of their abdomens sit around all day just because they are lazy. And I am working to figure out a solution to at least help me get on my feet some. I e-mailed Dr. T this morning and we exchanged a few e-mails. He mentioned trying a muscle relaxant, but I think I'll only do that as a last resort, considering my previous experience with a muscle relaxant. I'm looking into seeing if I can find a masseuse or massage therapist who will come by my home, only that is slightly weird, so I've got to, like, ask around. No searching Craigslist for this. LOL. And finally, I hate to admit this, but I am using a walker to get around. That's how bad the pain is. I knew from trolling thrift stores for a shower chair that they are a good place to buy walkers, and figured it is better than sitting on my ass for an entire month. And I pretty much have no pride or dignity left at this point, seeing as how I now have three conditions that most people my age experience only through their grandparents.

But all in all I feel good, and surprisingly calm and peaceful. Happy, almost. I took a shower last night, my first in almost two weeks, and let me tell you it was the most amazing shower I have ever taken. I sat in there for a good 20 minutes, letting the stream of warm water wash away all of my anxieties from the past month and trying to will it give me the strength to heal.

This is certainly the biggest challenge I've had in my life thus far - physically, emotionally, and even just logistically. But I can find a way to get through this. I have to. Even if it is just one small walker-aided step at a time.