Tuesday, September 29, 2015

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.

Saturday, September 26, 2015

Inappropriate

This is going to be an inappropriate post, on a couple different levels. But then again, breast cancer is an inappropriate cancer. I was reading a 'You know you're a breast cancer patient when...' on the breastcancer.org web site, and someone wrote that you know you're a breast cancer patient when you go to the dentist and accidentally start unbuttoning your shirt, because you're so used to showing people your boobs. LOL.

Anyway. I thought maybe this depressing and gross blog needed a funny story.

I wrote in my last entry that when I asked Dr. T to meet my mom, he poured on the charm, because I told him that she was afraid of doctors. Afterwards, I was certain he must have left a good impression, and the baby in me still seeks my mom's approval. So when we got out to the car and she hadn't said anything, I was anxious.

Finally, she was like, 'Okay...' Pause. Then followed with, 'There goes your theory.'

'Huh?' I asked, confused. 'What theory?'

* * * * *

Let me explain.

I've mentioned before that I was adopted. I was born in Thailand, although I've been told by Thai people that I don't look Thai, and by Chinese people that I look Chinese. Anyway, I'm Asian.

I've mentioned that Dr. T is Korean, and so is his wife, who, like me, was also adopted.

I don't know of any appropriate way to say this, so I'll just say it: I don't find Asian men attractive. I never have. Not that there are many Asians where I grew up, so it was kind of a non-issue. It's not as if there were hoards of Asian guys wanting to date me, and I refused because I thought they were ugly. But apparently I did tell my mom that I hoped I didn't have boys when I had kids, because then they would be ugly. (I know you aren't supposed to say mean, shallow things like that, and there is a lot of diversity in Asia, and yada yada yada, I'm just telling it like it is. LOL.)

* * * * *

'Your theory,' my mom said, 'that Asian boys are ugly.'

Eventually my mom added, for clarification, 'Oh my God, Waning, he is gorgeous!'

I contemplated this, and then was like, 'He is?!' I guess I'd always thought he looked like Glenn, from The Walking Dead, who is, I suppose, attractive? I mean, for an Asian dude. Honestly, I hadn't really thought about it. I mean, of course, I'm in love with Dr. T, you know that. Ha. But it never occurred to me it was because he was gorgeous. I mean, I'm in love with Dr. L, too. LOL. I soon found myself contemplating whether Dr. L was attractive or not. I've never really been able to separate personality from actual looks, so I just figured I love her because she is probably the most lovely woman I've ever met. I tried to picture Dr. L in my mind, then thought, yep. She's attractive. OMG, DO I ONLY LOVE THESE PEOPLE BECAUSE THEY ARE DROP-DEAD GORGEOUS?! Am I THAT SHALLOW?! Then again, there are actual real studies that show how it really pays to be attractive; attractive people even get lighter jail sentences than ugly people! ( = random fact that I remember from introductory psychology)

I could say that because I'm married, and not dating, I don't spend a lot of time thinking about whether people are attractive. (Not to mention, trying to get over a strange man seeing you naked and feeling your breasts on a regular basis would be far more awkward if you were consciously aware that said strange man is apparently the The Hottest Man On Earth.) And yet... my mom is also married, and not dating, and will be 67 tomorrow, and went on and on and on and on the whole 65 miles home about how darling and gorgeous Dr. T is, and do you think his wife is as good-looking as he is? And, 'I was expecting someone much older and chubbier, with glasses, but he is beautiful!' OMG, eeeeeeeeewwww, my mom is lusting after my surgeon! I felt like I was in junior high. I don't know if it is horrifying or hilarious. Horrifyingly hilarious.

In the end, all that charm, all those compliments, the passionate I became a doctor to help people monologue to try to convince my mom that doctors are okay, and all my mom was doing was thinking inappropriate thoughts the whole time. Oh. mygod. I will never be able to open my eyes ever again at an appointment.

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.

Tuesday, September 22, 2015

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.

Monday, September 21, 2015

Tamoxifen, Here I Come

I pushed it way too hard today. Sadly, 'pushing it' meant driving myself to my appointment, six blocks away, with my medical oncologist, dropping my daughter off at a friend's house along the way. I came home and was wasted tired, and despite napping, still feel horrid. It's beyond tired; it's that all-consuming, my body feels like it weighs 400 pounds tired.

Anyway, after scheduling appointments and canceling them I don't know how many times, I finally met with Dr. M to discuss part 2 of this never-ending nightmare. I fully expected to have a conversation about tamoxifen vs. ovarian suppression + something called an aromatase inhibitor, but it wasn't even an issue. It was so not an issue that I sort of questioned him about it, wondering if he remembered who I was, what my story was, the conversations we had had in the past.

To make a long story short, because I am tired, tired, tired, tamoxifen is the traditional route for pre-menopausal women. Or, to be more precise, it is the only route. Tamoxifen affects estrogen, and since my cancer is strongly estrogen-driven, taking tamoxifen will reduce my chances of a recurrence by 50%, according to Dr. M. I need to take it for at least five years, maybe ten. We'll cross that bridge when we get there, if I even get there. The only reason to not go this route is because of my history of DVT and the fact that I'm only 40. Tamoxifen can cause blood clots, and though it's fairly rare, I am at higher risk for this simply because of my history of DVT. As for being 40, which is 'very young' in Cancer Land, some oncologists would argue that I might want to be more aggressive. (In fact, one has.) Tamoxifen is the conservative route for me; ovarian suppression + aromatase inhibitor would be more aggressive.

I'll be honest - I've been DREADING ovarian suppression, which would mean getting shots every month to force me into menopause so that I could take an aromatase inhibitor. One of the major side effects of this is premature arthritis, and joint pain/degeneration, which is the second to last thing I need (second only to a recurrence, lol). I've gone back and forth between which route I want to go; there is a fine line between fending off a recurrence and ending up in a wheelchair. I had been leaning toward the more aggressive route after reading too many stories about how scary it is to have cancer at 40, but... I was easily persuaded back to tamoxifen with Dr. M's endorsement.

The more I think about it, no matter what route I choose, I'll never feel confident that the cancer won't come back and metastasize, and eventually kill me. Never. So quality of life matters to me. If I have a limited number of years in this body, I want them to be good years. Of course, we all have limited years. I keep thinking back to a professor I had in grad school who, despite being an exercise physiologist, complained about how the benefits of exercise were often exaggerated. As he used to say, we should not be espousing the idea that exercise will add years to your life, rather life to your years. It's about quality of life, not necessarily living longer. We can do everything right and still die before we think we should.

Dr. M said he was not overly concerned about my DVT, given that it was provoked by surgery. I don't have a clotting disorder, so my risk of developing blood clots as a result of being on tamoxifen is small. My cancer is not overly aggressive, and my oncotype DX, which predicts the probability of a recurrence, is low. Dr. M said the data showed that the women who benefited from a more aggressive therapy were those who had undergone chemotherapy for lymph node positive cancer who were under 35. So that seals it. Just as I didn't need convincing that I would have only a small benefit from chemo that was not worth the risk, I didn't need a ton of convincing that there was not compelling evidence that the benefits of the more aggressive route would outweigh the effects it would have on my quality of life.

I left with a prescription for tamoxifen, although Dr. M said I didn't need to start taking it right away - 'when you're ready.' He did say he would like me to start taking it before 2016, but that he understood that I've been through a lot, and this is all just... a lot. A lot to take in. He also said he did not think I would find the side effects to be horrid, and counseled me to not read too much on the Internet. LOL. After I've taken it for a month, I need to see him again so he can run some tests on me and make sure everything is copacetic. I made an appointment to see him again on November 20th, which means I need to start taking the tamoxifen by mid-October.

So basically I need to focus on recovering so that I can prepare to attack the natural order of my body in a new way. Fun stuff. Said no one, ever.

Friday, September 18, 2015

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.

Monday, September 14, 2015

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.

Tuesday, September 8, 2015

Reconstruction

Well, here we go.

Finally.

I'd be lying if I said I feel like anything except a complete wreck.

So many prayers, all around.

Saturday, September 5, 2015

Post Mastectomy: Day 4

Today was another blah day. I feel tired, sore, and unmotivated. My pain is actually manageable; it's the drain that is bothering me the most. When I take a deep breath or do movements involving twisting, I can feel the drain pushing against my chest wall or pinching my skin. It's not overly painful, but awkward. I've also developed minor bouts of phantom itching, which is maddening, and hopefully temporary.

But I think the hardest part right now is emotional. It's hard to get motivated to do try to fully recover - to start going on walks, for example - when I know that recovery much worse than this one looms ahead. Unfortunately, I feel like this has sort of been the story of my summer. I've never fully recovered from anything because there has always been something bigger looming. Eventually I will need to escape from this trap, given that there is no end in sight. This is a forever condition.

Bleck.

I hate this.

Friday, September 4, 2015

Post Mastectomy: Day 3

Today was an exhausting day, on so many levels. I don't think I have it in me to write a coherent entry; there are too many different emotions going on in my head, and I. am. tired.
  • I woke up this morning around 5 AM and took a hydrocodone, then went back to sleep. When I got up around 7:30, I felt pretty good. Good enough to partake in the excitement of a pig (yes, a pig) following my husband home after he walked my daughter to school, and good enough to pick a few things out of my garden while defending it against aforementioned pig. (We live in the downtown of a reasonably-sized city, so this is not an everyday occurrence.)
  • I dragged myself upstairs and washed my hair and washed up, without actually taking a shower.
  • I had an appointment with Dr. L at 10:30. Nothing remarkable. She thought everything looked good and said she was still waiting for the final pathology report. She also explained that the ridge running across my chest is the drain from the mastectomy, which made me realize that most of the pain and discomfort I'm feeling is from the drain. Gross.
  • I had an appointment with Dr. T at 2:30, and we didn't see him until around 3:30. I don't have the energy to recount all of it, but basically he said that my nipple looked really unhappy, and that if we wanted to try to save it, it needed time to recover from the mastectomy. If we proceed with the surgery next week, it will almost certainly die. He explained that when doing the flap transplant, he would cut in the same place Dr. L had used for both lumpectomies and the mastectomy, but that he would need to extend it approximately an inch across my breast. (It blows my mind that Dr. L sucked out my entire boob through one small incision.) This is necessary because he needs to get all the way up to my third rib for the blood supply. However, when he does this, it will cut off approximately 40% of the remaining blood supply to my nipple. He said that in a larger person, he could probably get away with just getting to the fourth rib, but since I'm smaller, I have smaller blood vessels, and he needs to go farther up. And, 'When I make the incision, it will probably be the last thing your nipple ever sees.'
  • Sigh
  • He assured me that he would clear out his schedule for me to do the surgery ASAP once we had determined if my nipple was going to make it or not but that we could not proceed with the surgery on Tuesday and realistically hope to save it. 
  • I thought for about ten seconds before telling him I wanted to do the surgery on Tuesday anyway. Nipple be damned. I can't wait any longer. 
  • Sigh
  • He did say he would do his best to save it, but that it wasn't likely. However, he would inject something called SPY, which would let him monitor blood flow to the nipple as well as turn my pee green. ('So don't be scared.')
  • There's also, of course, the possibility that the flap transplant won't even work, in which case, after all of this, I will end up with an implant anyway. (Won't it just be a fitting end to this if I wake up with a silicone implant and no nipple?)
  • Plus, despite my best efforts to gain weight, he did re-express concern over my lack of abdominal fat. 
  • Sigh
  • Good thing I'm pretty much too tired to get worked up about all of this. 
  • The last thing he said to me before leaving was that he would see me next week, then added, 'Chili cheese dogs! Eat a lot of them between now and then.'
I arrived home feeling tired and anxious and wondering why I am doing all of this, and if it is worth it or not. After dinner, I collapsed into my recliner, and pulled my laptop over to write this. I plugged my phone in to charge and noticed that I had missed a call from a phone number I didn't recognize. I checked my voice mail, and it was Dr. L. She must have been calling from her personal cell and she must have been at home, because there was a dog barking in the background. I guess it was a call that merited being made from a personal cell phone at home, before a long weekend, because she was calling to tell me that the pathology report was back and all the cancer is gone. I know I should feel elation, and maybe I will eventually, but I'm too tired. Too tired to feel happy, too tired to feel sad. Simply too tired to feel.

Thursday, September 3, 2015

Post Mastectomy: Day 2

Today was a rough day. I was extremely sore, extremely tired, and extremely restless, although I couldn't find anything I wanted to do. The day seemed interminable as I lay around doing nothing, popping hydrocodones, lamenting the fact that the recovery from the reconstruction is going to be 10 times worse than this one, and waiting for the pathology report from my surgery (no news yet). Eventually I settled on watching various things on TV and coloring in an adult coloring book a friend sent me in a care package. It was such a blah day. I keep trying to tell myself I just had surgery two days ago and it's okay to lie around doing nothing, but it still makes me feel gross.

My pain level is at its worst, as the feeling in my chest has begun to return, and I'm trying to move around more. The pain is not unbearable, just uncomfortable. I also seem to be getting a cold. At first I just thought it was allergies, but now it seems more like a virus. My nose is running, I've been sneezing all day (which hurts), and my throat hurts.

Tomorrow I have a post-surgery appointment with Dr. L in the morning, and a pre-surgery appointment with Dr. T in the afternoon. I'm almost looking forward to them, just so I can get out of the house and do something. Meanwhile, I'm still praying for clean margins, for Dr. T, and for a better day tomorrow.

Wednesday, September 2, 2015

Mastectomy + Post Mastecomy: Day 1

So the mastectomy is done.

My surgery was scheduled for 1:30, but Dr. L was running a little late, so I don't think it really started until 1:45ish. Dr. L took about an hour to do the mastectomy, then Dr. G put in a temporary tissue expander in preparation for the reconstruction in a week. It was all done by 3:30. I woke up around 4:00, and left the surgery center at 6:00. As worried as I was that this was an outpatient procedure, I was happy to go home. Aside from feeling woozy, I had minimal pain, and as the nurse said, there's better food and TV at home.

At home, I downed two huge bowls of chicken soup. I took it as a good sign that I was so hungry. In fact, I felt pretty great all of last night, considering. I slept downstairs on our recliner, and got a fairly good night's sleep thanks to the residual painkillers from the surgery + hydrocodone.

I'm a little more sore today, and actually have some throbbing pain in random places on my boob. I also itch all over, though I'm not sure why (anesthesia, perhaps?). But it's nothing compared to what I was expecting. I'm still taking hydrocodone to take the edge off, but overall I'm thrilled. Even the dreaded drain they put in to capture excess fluids is not as disgusting as I was expecting. I'd say that so far it's about the same as lumpectomy #1 in terms of pain. I even managed to put my contacts in this morning, and feel so good I'm a bit restless.

I don't really have anything profound to say right now, except that I'm glad this part is done. This is much less traumatic than I had imagined it would be. Between the nipple-sparing, skin-sparing mastectomy and immediate expander placement, I don't feel the major void I was expecting to feel. I feel... happy. Relatively so, anyway. I guess I got all of my mourning out ahead of the time, and I feel very at peace right now. A little tired, but at peace.