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.
WOW.
ReplyDeleteI mean, I knew this was a major surgery, but until you detailed all this, I don't think I truly "got" it, at ALL.
WOW.
no wonder Dr. T is proud. I'm insanely proud of YOU for going forward with the surgery you knew was best for you (despite your skinniness;) ha love that that was some pre surgery talk).
The ICU aftermath and then the day after sounds nearly tortuous - soooooooooo glad you had that great nurse to help when you broke down. I'm impressed you pushed through that kind of pain and struggle so long as it is.
Just WOW.
So thrilled it all went OK and you now can just sit and recover. I'm thinking of you and sending tons of strong healing and peace vibes. Hugs and strength doll!!!