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

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.

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.

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.

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.

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.

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.

The Last Day

Today is a weird sort of day. I joked all weekend that we were into bonus material; anything I accomplished was extra. I've accomplished a lot in the past few weeks, but there is still so much more to do that I know I won't be able to do for a long time. I can't decide if I want to run around like a chicken with my breast cut off today or just... chill. And enjoy what I've come to think of as The Last Day.

The last full day of my old normal.

My last day with my two God-given breasts. It's a weird feeling. I feel... I don't know. In a way, I'm so sick of all of this, I have no energy left to feel. I just do. But the anticipation of how I am going to feel after I wake up tomorrow with a hard lump where my breast used to be and a drain with bloody discharge leaking out of it is what has me the most worked up. I've had a long time to contemplate this - two months - so you'd think I'd be over it by now, but I'm not.

Because the reality is that you just don't know how you are going to feel until you are actually there. Maybe I'll feel fine afterward. Maybe I'll be one of those people who bounces back right away and is driving within a few days, returning to work, and moving on with life. Maybe I'll feel so fine I'll cancel the reconstruction. Maybe I'll be able to let my family go on the trip they were planning for this weekend. Or maybe I won't. Maybe it will be even worse than I'm expecting. Maybe I'll sink into a deep depression and want to kill myself. Maybe I will feel anger and self-loathing every single day for the rest of my life.

So many women declare with such bravado that they would definitely have no problem having their boobs cut off and living the rest of their lives happily free from wearing a bra. They say this because they think it will make me feel better, but it doesn't, because I know that it's not true. I also know they aren't lying; I just know that they don't know what they would actually choose if it were really them. And in the end, very few women choose a bilateral mastectomy with no reconstruction. Even nipple reconstruction, which seems like a lot of trouble for such a trivial body part, and one that I despise no less, isn't completely off my table right now, in the event that I end up losing my nipple. I never would have guessed even six weeks ago that I'd desperately want to save my nipple.

People react to their cancer diagnoses so differently. For me, it took a long time for the reality to sink in. My parents and my husband took my initial diagnosis much harder than I did, mostly because I was too stupid to understand how truly life-changing this would be. Even when there was a very real possibility that the cancer had spread into my rib, I wasn't that worked up. I was just thinking there must be a quick fix for this. Ribectomy, anyone? (Who needs their rib, anyway?) I didn't know that this would technically put me into Stage IV, terminal. Others seem to react with more hysteria initially; the visceral OMG GET IT OUT OF ME! GET IT OUT OF ME! reaction that leads people to get bilateral mastectomies for 0.5 cm, stage 0, grade 1, ductal carcinoma in situ within a few weeks of their diagnosis. It is the treatments that give these people comfort, whereas for me, it's the treatments that I loathe. I don't know if I will ever feel that elation over 'having the cancer gone' that some describe after a mastectomy. Then again, maybe I will. I don't know.

Some people have told me it's too bad I've gone through all of this, only to have it end this way. I could have had this done in May, and I would be all recovered now, happily getting monthly shots to put me into menopause, taking an aromatase inhibitor, and in the middle of a lecture this very moment, instead of at home. But the truth is I wasn't ready back in early May. Even after lumpectomy #1, I wasn't ready. Even after lumpectomy #2, I wasn't ready; I honestly would have considered a third re-excision if every single one of my doctors hadn't counseled me otherwise. I actually feel pretty strongly that I have cancer in my right breast, too, I just know it. I probably ought to proceed with a bilateral mastectomy, but I'm not ready for that. It's easier for me to wrap my mind around having to go through all of this again sometime in the near future than it is for me to wrap my mind around a bilateral mastectomy, and since none of my doctors counseled me to have the double, I continue to proceed one conservative step at a time. All of this is part of my 'new normal' of living with cancer.

I started praying for my surgeons ever since I had a date for my mastectomy, and I feel that God must be mocking me in some way by doing this to me. Nonetheless, I will keep at it.

Blessings

• I'm grateful to be back in the hands of Dr. L, and thankful for who she is. After she was so helpful to me last Tuesday, I sent her a thank-you e-mail, and concluded with: Please take care of yourself this week. (No darts please!! :)). She replied: You are so sweet, I'm so glad we could help out. (...) I absolutely plan to stay away from darts, especially now! Gives me the willies just thinking about it!! See you next week! Jane
• I continue to be thankful for the love and support from my family, friends, and colleagues.  
• I'm thankful for a new Chair who has worked tirelessly to make my work situation as minimally stressful as possible, complete with the e-mail he sent me last Thursday: I met with [The Dean], [his administrative assistant] and [the head or HR] today about your leave. The bottom line is you are totally covered and will receive full pay for the semester. Even if you don't do another minute of work for ABC College this semester, you’ll still have at least 5 days of sick leave left. You might even have 10 if you continue to accrue sick leave days over the semester – [head of HR] is checking into the official policies on this. If you want to come back before the end of the semester and work on "other duties", you can stop drawing as much from sick leave. Everyone is very happy to be flexible with how we structure your leave, so don't worry about it. We'll sort it out when you feel ready to come back. For as much as I complain about work, this is a true blessing.

Hopes

• I pray for Dr. L, for her safety, health, and clear mind tomorrow. I ask the same for Dr. G, the plastic surgeon who will be assisting her. 
• I pray the surgery goes as she planned, that she will be able to do a nipple-sparing mastectomy.
• I pray for clear margins, that after all of this I won't have to do radiation or chemotherapy.
• I pray that I will make it through with no complications, and that the pain will not be too horrendous. And if it is, I pray for the strength to get through it.

I realize a lot of people have life-changing things happen to them without the luxury of contemplating them. Sometimes people are thrust into things full force, waking up the next day with a 'new normal' that is so devastating it boggles the mind. But people are shockingly resilient. We often admire the strength of others, not believing that we have it in ourselves to behave the same way, but I believe we do. At least, I pray that we do, that I do. While I'm thankful for the time I've had to come to terms with everything that is happening, I need to stop circling and start moving forward again. I pray this surgery happens tomorrow. I pray that all of my mourning is done, and that I will wake up feeling happy.

What a long, strange trip it's been.

I should be in surgery right now, but instead I'm sitting at home in my nightgown, typing this. I'm still trying to wrap my mind around the events of the past 36 hours, and I honestly feel a bit fuzzy, like this isn't real. It's like one of those weird dreams you have where nothing makes sense and when you wake up you're like, 'Ah! No wonder nothing made sense! It was all a dream!'

On Monday, I had pretty much theeeeee most stressful day at work, but worked my hardest to put out as many fires as I could before leaving, thinking that I was not coming back until October. I left as a huge ball of stress, and later had to e-mail colleagues to ask them to water my plants for me, take my lunch that I didn't have a chance to eat out of the fridge, to put in a work order to have more chairs moved into my classroom, etc., etc. I wanted a day with no work before my surgery, and knew that if I went into work on Tuesday, I'd get sucked into all sorts of things I really didn't want to be sucked into.

When I finally got home, I was practically excited about my impending mastectomy - at least as much as one can be excited about amputating a body part.

Then Dr. T called.

Or wait.

I called him, and he called me back. After my post on Sunday night, I was starting to get a little stressed about the fact that I was getting ready to have this LIFE CHANGING SURGERY, and had heard nothing from any of the surgeons who were going to chop off my boob, then turn the fat in my abdomen into a replacement boob. I mean, geez, my local hospital seemed much more concerned about me when I was just going in to have an ice cream scooper put into my boob in an outpatient procedure. Now I'm having this surgery that requires a 3-5 day hospital stay, and I wasn't convinced anyone really knew I was having the surgery, including my surgeons. I intended to e-mail Dr. T and ask him WTF?! once I was done with my blog post, but he actually e-mailed me before I got to it. He asked me to call him 'tomorrow afternoon,' ( = Monday afternoon) to 'discuss your upcoming surgery.'

No big deal, I thought, he's just checking in. Finally.

Around 6 PM, we were having a conversation that went something like this:

Him: I have the results of your blood tests, and you don't have a clotting disorder. Your CT scan also looks great. But there is something about the surgery that has nothing to do with you.

Me: * silent * I can't believe he's pulling off the oldest trick in the book - It's not you, it's me!

Him: It's me.

Me: * silent *

Him: I hurt my eye over the weekend, and I have blood in my anterior chamber. Basically I can only see out of one eye right now, and I'm unable to do any surgeries.

Me: * silent *

Him: Are you there?

I honestly can't recall a lot of what followed. He did a lot of uncomfortable rambling - clearly, he felt really bad - and I did a lot of uh-huh's and ok's, and yeah's, while not really listening to him and just thinking I cannot fucking believe this! over and over and over.

We left things sort of open-ended because I cannot make decisions about realities I haven't yet accepted. After I hung up I wanted to curl up into a ball and have a good cry, but we had to go over to my parents' house for dessert - ironically, to firm up the plans for the week - so I had to hold it together. Later that night, I did have a good cry, then immediately sat down to start regrouping.

One of Dr. T's recommendations was to go ahead with the mastectomy on Wednesday and delay the reconstruction. However, after talking, I realized I've had zero communication with the surgical oncologist because I just assumed this was mostly Dr. T's surgery, and he was taking care of it. The surgical oncologist wasn't my favorite, but I figured Dr. T was the most important person in the surgery. The bottom line is that with Dr. T out of the picture, I saw no reason to go up to University Hospital just for the mastectomy. So late Monday night, I shot off several e-mails:

1. I e-mailed my Chair, asking to meet with him Tuesday morning. Clearly that October 5th return date isn't going to work for me now. After all my careful planning. Sigh.
2. I e-mailed Dr. F, the surgical oncologist at UH, asking her get back to me about my options, and whether or not she thought she would be able to do a nipple-sparing mastectomy. Since Dr. L seemed confident she could do one, I figured there was really no point at all going with Dr. F if she wasn't willing to try. 
3. I e-mailed Dr. L, explained the situation to her, and asked her if she could do a mastectomy for me ASAP (like, next week). I told her I completely understood if she couldn't, in which case I would keep my appointment up at UH on Wednesday. However, if it were possible, I preferred to do it with her. I crossed my fingers she would get back to me promptly because I really needed to make a decision fast. 

On Tuesday morning, I was meeting with my Chair about the possibility of just taking the semester off, if need be. He said he would look into the university's policy on sick leave, which is weird territory for faculty because no one really takes 'sick days.' But apparently we do have them. In fact, after six years, I have 55 days of leave. You learn something new every day. While in the meeting, my cell phone rang, and I apologetically pulled off the pompous this call is more important than you are, and said I really needed to take the call. And I'm glad I did, because it was Dr. L. She said she had just gotten my e-mail and yes, she could do a nipple-sparing mastectomy for me next week, and she had already arranged for me to meet with the plastic surgeon she works with; he could see me at 11:30. All this by 9 AM. (See? This is why I love her!) (And I knew there was a reason I brought her flowers the last time I saw her, other than the fact that I love her. You should always have a surgeon on hand who is willing to do a last-minute mastectomy for you.)

I wrapped up my meeting with my Chair, went to my office to answer a few of the ten bazillion e-mails that are inevitable the first week of classes, then headed off to my appointment with Dr. G, the plastic surgeon. While I was waiting, my cell phone rang, and since I wasn't sure when I would be called back, I didn't answer it. I checked my voice mail, though, and it was Dr. F, the surgical oncologist from UH. She asked me to call her back on her personal cell to discuss options. Seeing as how I was working my own set of options, I immediately felt guilty, like I was cheating on her.

I had a relatively uneventful visit with Dr. G. I liked him, and I'm glad I met him, as I'm starting to accept there is a real possibility that Dr. T won't come through for me, in which case I need a Plan B. Dr. L had already filled him in on the situation, and he explained that he would have a very minor role in the mastectomy, as all he would be doing was putting in either a tissue expander or an implant to hold everything in place before the reconstruction. He said it would be very easy because my skin looked healthy and 'Your breasts are the shape the designers were thinking of when they designed implants.' LOL. Amazingly, I left with a date and a time for the mastectomy, which had been worked out between Dr. L's people and Dr. G's people while I was having my breasts measured and photographed.

September 1st, 1:00.

I left feeling much lighter than I was feeling just a few hours earlier. It all fell into place so seamlessly, it felt like the right thing to do. Of course, I also 'knew' that Dr. T was the right surgeon for me when I met him, so I understand that cautious optimism is the appropriate attitude.

I left Dr. G's at around 12:15 and went home to grab some lunch before realizing I didn't actually have time for lunch before getting downtown to my 1:00 appointment with our lawyers, to sign the final copies of our wills, powers of attorney, and advance directives. I wolfed down a tomato from the garden and headed out. So much for gaining weight.

The attorneys were sooooo slow. They actually seem like fun people, but every time we've met, it seems that at least one of us is in a huge hurry. My husband had an appointment at 2:30, and my cell phone was exploding with text messages, e-mails, and phone calls while we were sitting there discussing a hypothetical scenario in which I am diagnosed with stage IV cancer, then get into a car wreck and need CPR. Does marking 'withhold CPR' on my advance directive mean I don't get any life-saving measures if I become stage IV, which is technically 'a terminal condition'? Or suppose I become a vegetable during surgery, and my husband is so distraught that I'm a vegetable that he wrecks his car driving home and becomes a vegetable, too. So we're both vegetables but we aren't dead. What then? As one of the attorneys said, she practices 'soap opera law,' meaning we get to discuss all these dramatic and highly unlikely scenarios, the type of things that really only happen on television.

Anyway, eventually my husband had to leave, so the attorneys said they would finalize the papers and send them home with me. While they were organizing all of it, I stepped out to put more money in the meter and make some phone calls. Only I already had a $20 ticket! Jesus H, are you f-ing kidding me? The meter must have JUST EXPIRED; I could still see the meter reader the next row of cars over. Great, just great. I should have just left the ticket and gone back, but because I am honest, almost to a fault, I stuffed the ticket in my purse, put money in the meter, and headed back toward the lawyers' office. I had a little bit of extra time, so I sat down in front of the courthouse to try to call Dr. T, who somewhere in all of this had texted me and told me he could do the reconstruction on September 8th. I wanted to make sure this would work with a September 1st mastectomy before canceling my appointment at UH. He didn't answer, so I decided to go out on a limb and call Dr. F anyway. It was almost 3:00 and I figured she deserved to know that I wasn't going to be showing up for surgery the next day. I couldn't hear very well, because the wind was blowing and there was a lot of traffic and construction, and there are a lot of weird, loud people and weird, loud conversations that take place outside of a courthouse. Dr. F was actually quite nice, and said she was really sorry things had turned out this way. She was also understanding of the fact that I wanted to do the mastectomy locally, and had nothing but good things to say about Dr. L - As you know, she will take great care of you. She said that in 19 years of doing surgery, this was the first time another surgeon had canceled on her, and in 19 years she had only had to cancel surgery once, because she had the flu. So when I ask in an exasperated voice, WHAT WERE THE CHANCES OF THIS HAPPENING?! I now know. They were about the same as me getting a blood clot after my hip surgery. Minuscule.

After picking the final will and other papers up from the lawyers, I headed back up to the university to pick up my son and take him to his annual physical on the opposite end of town. I was supposed to get there at 3:45 to fill out the 'ages and stages' questionnaire but we were pushing it to even make it by 4 PM, which was our actual appointment time. Or so I thought. While we were driving through traffic and I was cursing all the slow people who were not paying attention because they were on their phones, Tara, the secretary from the pediatrician's, called to ask me where I was. LOL. This comedy of errors pretty much sums it up: Tara called on Monday to remind me of Katie's appointment at 4:00 on Tuesday, and I called back to confirm that she meant my son and not Katie, because we don't have a Katie in our house. She said, oh yes, that's what I meant, I just got confused because Katie was the next person on my list. So when she called me this time, I was like, 'What do you mean where are we? I thought our appointment was at 4!' and she said, 'No, your appointment was at 3:30. Katie has an appointment at 4.' Jesus. Finally I just barked at her, 'I've had a really bad day so just tell me what you want me to do.' Meanwhile, I missed my exit onto the freeway because I cannot drive and talk on the phone, and having to drive through the downtown added at least an extra 10 minutes (though we did actually get there at 4:00 on the dot).

After the appointment, I raced home, helped my husband with dinner (OMG I was starving!), then after dinner, some of my lovely friends came by for what was supposed to be a last-glass-of-wine get-together before my surgery that was supposed to be happening the next morning. I realized around 7:45 PM that I needed to call my mom and let her know for sure that I didn't need her to come by at 3:30 AM this morning, so I excused myself to make a quick phone call. On my way back outside, my cell phone rang, and it was Dr. T, so I answered, because we had been e-mailing and texting back and forth and doing a lot of phone tag, so I wanted to touch base with him. I could tell he was still feeling bad because he talked for a really long time, and by the time I got back outside, my friends had left. OOPS! I felt bad, but I was too tired to feel bad for very long. I mean gosh, what a crazy day.

Crazy!

And surreal.

After we got the kids in bed, I pretty much crashed. I was so worn out - both physically and emotionally - that I fell asleep with no sleep aids whatsoever before 10 PM and actually slept like a baby until 2 AM. I dozed on and off between 2 and 6, and finally got out of bed around 6:30. But it was weird not having anything pressing to do.

It's 11:30 and I'm not even dressed yet. I think I'm still recovering from yesterday. So I shall wrap this up, go take a shower, get dressed, then head up to work for a meeting with my Chair and the good folks who are covering for me during this saga. And then I will take my kids to gymnastics.

And wait.

And wait some more.

Meeting with the Hematologist

I went up to University Hospital today to meet with Dr. Anti-Coagulation, upon Dr. T's insistence. It was a pretty useless and uninformative consultation, and Dr. AC was sort of weird. He was weird in that way that my husband seems to love; in fact, he reminded me a lot of my PCP, Dr. A, who is also weird in a way that doesn't necessarily work for me, but that my husband loves. But at least he was not like OMG no way you can have this surgery! In fact, he seemed to think it was pretty stupid I was there, and that Dr. T was stupid for wanting me to be there. Overall, he was extremely snarky about pretty much everything and everyone, and seemed anxious to get home. That was actually good, because my appointment was at 4:00 and we had dinner reservations at 6:00, so it wouldn't have worked if he had been running late and had not been clearly anxious to get home. Traffic was really bad on the way up to UH, and it took us about an hour and 45 minutes to get there. We arrived around 3:55 and were called back so promptly I didn't have time to finish out the health questionnaire they gave me. I was trying to finish it during the pauses when Dr. AC was going through my records until he barked, 'Don't worry about that. I'm not going to read it!' LOL. There you go.

He did take a very thorough history, up to a point, and we talked about everything from my childhood nosebleeds to my tonsillectomy to my post-pregnancy bleeding to my recent DVT. We really didn't talk about cancer, though. I'm not sure if he was actually aware I have cancer. Seriously. Somehow we didn't really get that far, and I'm not sure how well he really read my history. I mentioned my two lumpectomies, but I'm not sure if he was listening. It is hard to describe his very quirky personality, but this illustrates it pretty well: In going through my history, he asked if I had ever had any bleeding problems during or after surgery or childbirth. I said no, though I did bleed a lot after my daughter was born, but that was because part of the placenta was stuck inside me. He replied, 'For real, or did someone just make that up?' I said no, for real. He said, 'Real as in you actually went into the operating room and had the placenta taken out?' I said yes, I definitely had surgery. Then he said, 'Okay, because you know, sometimes medical people just make things up.' HA! Then we got to the part about my hemoglobin E, and apparently somewhere along the line it got recorded as hemoglobin E/beta thalassemia. As he read it aloud, he looked at me, and I said, 'I do have hemoglobin E, but some medical person just made the beta thalassemia part up.' He thought that was hilarious. I told him it was so long ago that I was told I have hemoglobin E that I was starting to wonder if I had made it up, except I was pretty sure it was real because my son has it, too. That much I remember. In the end, he said having thalassemia wouldn't be out of the question, as it's a very common mutation, and, 'Since you're here, we'll run a test for you to be sure it's made up.'

He said he would run a number of tests on me, but they likely wouldn't be very helpful. He said that approximately 1 in 20 people have some sort of factor that makes them 'more likely' to develop blood clots, but that 1 in 20 people don't, in fact, develop blood clots. So whatever. Then he added, 'And besides, I don't know if you've seen these e-mails between me and your surgeon, but I asked her [sic] what she would do if you did have an elevated chance of a blood clot.' Which is exactly what I've been trying to get at! I mean, that's the important part, right? So I asked what Dr. T had said, and he read the response to me verbatim, 'I just want to be sure she doesn't develop another blood clot during surgery.' Then he rolled his eyes and made a comment about how this was such a typical wishy-washy doctor response. So he had replied to the e-mail, 'Yes, but what are you going to do?' And Dr. T had replied that he would do a 'less invasive' surgery. Which is exactly what I've been worried about! And exactly what he will not admit to me! Which is exactly what has been keeping me up all night, tossing and turning and wondering if I'm being wined and dined and if, after all of this, I will wake up with an implant on August 26th! ARGH! So I guess Dr. AC is at least sort of advocating for me, even if in a really bizarre and roundabout way. Like... what exactly does Dr. T want to hear? And what will he do if he doesn't hear what he wants to hear?

Eventually Dr. AC said he didn't see a reason to think I had a substantial risk above the usual risk, and hopefully all the blood tests would come back normal, in which case he would be fine recommending a low dose of prophylactic anticoagulant post-surgery. I asked him what his recommendation would be if the results weren't normal, and he shrugged and said he didn't really know. He said I could possibly do the surgery and be on a high dose of anticoagulant post-surgery, but that plastic surgeons were always worried about hemorrhaging 'messing up their work.' I said I didn't think I was as worried about thrombosis as Dr. T. I mentioned that he had read some obscure study about how people with hemoglobin E who had had their spleens removed were at higher risk for blood clots, which is why he was so worried. I said I had looked up the study, and the reason the people had their spleens removed was because they had hemoglobin E plus another mutation. Dr. AC snarkily congratulated Dr. T for reading journal articles - impressive for a plastic surgeon. LOL. He said spleens were, in fact, very important as far as blood clot formation goes, but my spleen was intact, so it wasn't really an issue. Which is exactly what I think!

Then he asked me, 'Since you've obviously read up on this and thought about it a lot, what worries you more? Hemorrhaging or thrombosis?' LOL. I said neither sounded great to me. I said I wasn't super worried about thrombosis because everyone seemed confident that my DVT was a result of my hip surgery and not a clotting disorder. He interrupted me to ask who 'everyone' was. Oncologists, I said. 'Oncologists?' he scoffed. 'What do they know?'

Did I mention that he IS an oncologist? I mean, it seems that almost all medical oncologists are board certified in oncology and hematology, but most are oncologists above all, and only hematologists insofar as it allows them to treat leukemia patients. Dr. AC is obviously a hematologist first, oncologist second, but it was still one of those comments that leaves you scratching your head. I said I didn't want to have to choose between hemorrhaging and thrombosis, and started to say, 'Isn't that why you make $400/hour?' but then changed my mind and said, 'Isn't that why I'm paying you? So you will tell me your opinion?' He laughed and said, 'Don't you know? The modern medical model is not that we tell people what to do; we collaborate with patients and give them information.' I don't like that model, I said. I'm tired of making decisions. I am old school.

So he said the potential clot formation would worry him more than the hemorrhage. 'I mean, you're not going to bleed out.' Then he said, 'What's the worst thing that could happen? You might have to have a mastectomy.' Huh? Newsflash - that's already happening. IS IT ME, OR IS EVERYONE AROUND ME CRAZY?! Finally I said I was fine taking an anticoagulant after the surgery, especially if that would make Dr. T feel better. Then my husband interjected, 'Yeah, I don't want his hands shaking when he's trying to reattach all those blood vessels.' LOL.

In the end, Dr. AC said, 'Now that I've been completely unhelpful, is there anything else you want to ask me?' So my husband jokingly said, 'Yeah, what's the traffic going to be like on the way home?' Then we made small talk for a few minutes. Earlier he had asked me about my job - noting that I taught at ABC College, and asking me what I taught. So then he asked me where I went to college and grad school. I said I went to college on the east coast and grad school on the west coast. I usually don't bother with the specific names of the schools because most people here haven't heard of them. But then he asked me, 'Do the schools have names?' HA! So I told him, and it was obvious he was familiar with them because he replied, 'So which one did you like better? Do you like cold weather with an air of elitist or warm and laid back?' I told him I was a definitely a cold and elitist person, much more than warm and laid back. He thought that was funny. Then my husband declared he was a proud graduate of a warm and laid back school, and somehow we started to talk about swimming and diving, and he and my husband started gossiping about some former executive director of USA Swimming.

I can't figure out if I loved the guy or if I think he is absolutely crazy cakes. Maybe a little of both. Either way, it doesn't matter, because I won't be seeing him again, I hope. So whatever. He definitely seemed willing to try to help me make the surgery a go, so that helps put my mind at ease. Like, he's definitely not in cahoots with Dr. T or anything. Overall, he seemed very reasonable, even if a little nuts.

The whole appointment took about 45 minutes. Afterward, he walked us to the blood draw lab and I sat there until 5:00 waiting to have blood taken. The phlebotomist was having a hard time getting blood from the woman ahead of me, and by the time she got to me, the cleaning lady was in the lab. Fortunately, I have good veins and the draw was fast. I probably should have said that I had already had some blood drawn by my PCP, only I wasn't sure exactly what tests either doctor had ordered, and I wanted to make sure that EVERYTHING that needs to get done by August 26th gets done, and figured duplications are better than leaving something out. Hopefully my insurance will pay for duplicate tests.

When we left, the clinic was shut down and everyone was gone. See? I was right. They were anxious to get us in and out. We left shortly after 5:00 and went and had a really nice but really insanely expensive dinner. (Thank you to my mom, who volunteered that we should have a nice dinner on our way home. Go mom!) When we got home, it was around 8:30, and we could hear my mom with the kids upstairs. We decided it would be easier if we just let her finish putting them to bed, so I came into the office to check my e-mail. Apparently the lab is open later than 5:00 because I had two test results back already! And the results make me very hopeful. The first result was just a standard CBC (complete blood count), but the second was a test for antithrombin III activity. Since antithrombin III inhibits coagulation, I should be worried about having a deficiency. Only I don't. Apparently the normal range is 72.0 - 125.0 U/dL and I was 91.0 U/dL, which I feel is safely smack dab in the middle of normal. Go me.

And so I continue to pray that this can happen and happen well.

Wined and Dined

A common complaint you hear from people is that they feel like their surgeons aren't nearly as attentive to them post-surgery as they were pre-surgery. The surgeons tell them how great and how life-changing the surgery will be, then afterwards, when the patients are disappointed with the results, they are like, 'Oh, oops, a lot of times it doesn't work! Read the fine print!' In other words, people feel wined and dined, then discarded. Of course, there are always two sides to every story, just sayin'. This seems to be a not-rare (even if not super common) thing in orthopedics; I'm sure we all know someone who had a semi-elective surgery for an orthopedic condition that didn't really do anything. (I say semi-elective because as someone who suffers from a painful orthopedic condition, I understand that just because something won't kill you, it's not really 'elective' if you want to give yourself a chance of continuing to live a normal life.)

Although I have little experience with plastic surgeons, they seem like they might be a wine you and dine you group of individuals. I've always been wary of plastic surgeons, although I now realize that many of them do much more noble things than just cosmetic surgeries. Many of them reconstruct people's faces after horrific accidents, many treat patients with severe burns, and many treat cancer patients. Technically, breast reconstruction after a mastectomy is an elective surgery, even though is far from the same thing as an elective breast augmentation, IMO.

I'm starting to worry that I've been wined and dined by Dr. T. I mean, I don't feel purposely deceived or anything. This wouldn't be logical considering it was just dumb luck that got me face time with Dr. T in the first place, and he had about 15 minutes to review my case before I saw him. It's just that maybe he has one of those magnetic personalities that makes a person a successful winer and diner, one that sucks people in immediately, whether intentional or not. Being in academia, I'm constantly told that students decide within the first five minutes of the first class whether or not they like you. Or is it two minutes? Or 30 seconds? Whatever. It's not a long time. But the point is, despite the fact that I'm sure someone got a doctorate in education for figuring this out, there is probably some truth to it. LOL.

Needless to say, as time passes and my anxiety levels rise, I'm feeling less love toward Dr. T, and more distrust. I don't know if this is rational or not; hopefully not. I sent him an angst-y e-mail on Friday about what, if anything, I needed to do to arrange to see this hematologist colleague of his, and to be fair, he did e-mail me back on Saturday morning to let me know that they would call me. And to be fair, they did call me today. And they told me the first appointment they had was August 27th. Ummm, okay, that's... not helpful. But apparently Dr. T just submitted a referral for a 'routine consult.' So basically I threw a hissy fit and told the woman I had breast cancer and was scheduled for a mastectomy August 26th, and got myself an appointment on August 10th. But still, I'm feeling somewhat annoyed and wary that Dr. T is the one who is making me see this guy - and it can't be just any hematologist, but it has to be this supposedly Top Anticoagulant Hematologist - but yet I'm the one having to throw a hissy fit to get an early enough appointment. We seem to moving at the pace of an elective cosmetic surgery, not a patient has cancer and had one positive margin after the first surgery, and three positive margins a month later, so we need to GET THIS SHIT OUT OF HER ASAP surgery. Yes, the reconstruction is elective, but the mastectomy is mandatory. So either way, the breast has to be amputated on August 26th, and the surgeons themselves are the ones telling me that if I'm going to do reconstruction, I'll be much better off doing it at the time of the mastectomy. As Dr. L would say, argggg and poop.

I'm also a little disconcerted about this late date considering I really cannot do any appointments August 12-18, and what if this guy wants to do more tests? Like... is he magically going to look at me and tell me I'm either okay or not okay? Or have he and Dr. T already decided I'm NOT okay to do this surgery, and Dr. T doesn't want to tell me, so he is making his colleague tell me? (This is what I fear the most.) What exactly am I supposed to be discussing with this guy? A little guidance might be nice. As Dr. Evil would say:

confoundedinterest.wordpress.com

At any rate, I've decided to be proactive, because for me, planning helps alleviate stress. If I really do have a clotting disorder, I want to know sooner rather than later. Definitely not just a few days before surgery, at which point I have no idea what I'd do. If Dr. T feels like it is a real possibility that I can't do this type of reconstruction, I want to know NOW. Even if it's just something like a 10 or 20% chance, I want to know. I at least want to know what he is thinking, even if it is bad. I am okay with bad, as long as it's not out of the blue and completely unexpected. So I called Dr. A, my PCP, today and requested to have my blood tested for clotting disorders. We actually talked about this a while ago, before I knew I had cancer, just because this is something you should know about even if you don't have cancer. I couldn't do it while I was taking Xarelto, though, and I think he said I needed to be off Xarelto for a month before we could do the test? Anyway, I've been off Xarelto for over a month, and figure this is one thing I can take care of immediately, with my PCP. After some ado, I got an appointment to go in on Wednesday for a blood draw. 

I also e-mailed Dr. L over the weekend about whether it would really be possible for her to do routine post-mastectomy care for me, and what, if anything, I would need to do to arrange for this to happen. I haven't heard back from her, so I guess we will see if she is a winer and diner, too! All in all, I'm feeling extremely angst-y and somewhat disillusioned. I guess one thing that's becoming really clear right now is that this is going to be an adventure until the bitter end. Maybe I'll talk to my PCP about the anti-anxiety meds after all.

Emergency Room (for my computer)

Today was not a good day. Even in a normal, healthy, cancerless mode, I'm an emotional basketcase, so the ups and downs of all of this are practically killing me.

The day started out in typical fashion with me waking up, getting coffee, and attempting to log onto my computer, only to discover that it was on the fritz. I won't bore you with the technical details, but basically the screen was blinking incessantly, to the extent that I couldn't even shut the computer off to restart it to see if it was a fluke. I had to actually turn it off by using the power button (imagine that), but that didn't help. After three restarts, my computer was still acting like a bipolar in manic mode. So after getting my daughter dropped off at summer camp and my son dropped off at daycare, I went up to work and went by the IT department on my way to my office. The way my computer was behaving screamed VIRUS to me, so I figured it might be a quick fix. Except it wasn't. And there was no fixing to be done. (Now is a good time to let you know that I am basically computer illiterate, so if I say shit that doesn't make sense, I apologize.)

Three hours later, I left with a computer that only works in safe mode (but hey, I can still blog from it!) and a prescription for a new computer. Three hours. And I sat there the whole time and watched the guy work for three hours straight, so he was really working on it for three hours. It turns out the tech was one of my former students, so maybe that's why my computer got all-star treatment, but hey, that's better than my computer getting on the fast track to organ donation, because I have plenty of former students who would have gone that route. LOL. The weird thing is that I don't use our tech support very much, so I wasn't even sure if they even fix personal computers. I mean, they should, because I use my personal computer for work 90% of the time I'm using it, and the only reason I don't pursue getting a laptop through the university is because then I would worry about blogging from it. And, when I come out with my best-selling book about breast cancer, bad hips, and DVT, I don't want the university to have any rights to the millions of dollars I am going to make off of it, hahaha.

I was kind of surprised that when I took my computer in, they never asked me to fill out any paperwork or verify that I was indeed part of the university or anything. I mean, heck, I could have just wandered in off the street, but I guess they knew who I was. I realized this later, when I received a couple e-mails through my university e-mail, detailing the condition of my computer and asking me to fill out a survey about the service they had provided, even though I never filled out any paperwork or anything. Ummmm, creepy? Or good? The creepy thing is that the login for my computer is my hotmail account, and every time the tech had to reboot my computer, which was many times over the course of three hours, he had to ask me to re-log in. Eventually I just gave him my password so he could do it himself. I mean geez. But then tonight, I got paranoid and Googled myself based my hotmail account... and yeah. Let me just say that if you have a public blog, and at one point I left a comment about drinking too much or how ultrasounds of unborn babies are creepy, I may have deleted those comments. Don't take it personally.

At any rate, since it was a personal computer, I wasn't allowed to leave it and come back later. (Bureaucracy, gotta love it.) So I stayed. And of course, I had no idea it would be three hours. I include this detail because it was actually sort of interesting to watch the IT help desk in action; it was much like watching a medical team in action, only with much less at stake. I can attest to the fact that the techs really did try very hard to save my computer, and these techs were quite competent and knowledgeable people. IT help, sort of like medicine, is pretty hit or miss. I know that a lot of tech-y types live by the mantra of Your failure to plan does not constitute an emergency on my part, which I get. Really, I do. At the same time, for faculty at a university, there is tremendous pressure to use technology in our teaching, and many of us are not trained in this sort of thing, nor do we receive regular opportunities for training in this sort of thing (though it is getting better). So our emergencies are often not our own failure to plan, but failure of the system to make sure we don't have emergencies in the first place, by educating us. So yeah, if I were computer literate, I wouldn't have these emergencies. But then half of you wouldn't have a job, the same way probably half of health care workers in emergency medicine wouldn't have jobs if people received more regular care for their conditions. So deal with it! And fortunately, they did, because I was most definitely not in the mood for any shit today. 

Anyway, apparently the graphics driver on my computer is dying. I think it has been faulty from the get-go, but that is a different story. The tech/my former student was very apologetic in telling me that it was a fixable condition, but that I would probably be better off just buying a new computer. So around 12:30, I finally headed up to my office to water my plants, get files off my work computer, and re-connect with some of my colleagues. (Interestingly, one of them just had surgery to fix a torn labrum.) At this point, I am planning to teach my pre-term class, so that is good news, I think.

Around 2:30, I left to head off to Best Buy to get a new computer. This really isn't the way I had planned for my day to unfold, and dealing with the dead computer added a whole dimension of stress to my life that I realize probably sounds trivial, but was still RIDICULOUSLY ANNOYING. I'm sure you can all relate to the stressfulness of a dead/dying computer, but it was even more ridiculously annoying considering all of the other technology fails I've had in the past month, which I have not written about because I really try to keep my bitching to a minimum, and reading about washers and phones that don't work is some boring shit. As I texted a friend, if it is appliances that keep dying on me, I guess I should be happy with that. But at the same time, I sort of feel like, geez, could I catch a fucking break?! Yes, I know it could be much worse, but it could also be better!

Around 4:30, I was still messing around with various laptops in Best Buy, and trying to eke out information from the ridiculously unhelpful 'customer service' guys. I had been texting back and forth with a friend I was thinking of hooking up with this afternoon, before my computer emergency, and with my husband, about dinner plans, and whether he could pick the kids up. So when my phone rang right after I'd finally managed to get some real help, I figured it was either my friend or my husband, only it wasn't, it was Dr. T. Even though I knew it was him, because I programmed him into my cell phone after our chat on Monday, I must have sounded really pissy when I answered, because after asking for Waning (he remembered I don't like to go by Ms. Moon), he said, 'I'm sorry to bother you.' Haha, yes, how inconvenient that you called me! 

Let me just say that Best Buy is not the greatest place to have a Cancer Conversation, and especially not after you've just expressed annoyance that after over an hour, no one is really helping you, so someone finally does, and then your cell phone rings, and you act all high and mighty and say, 'Sorry, but this is really important.' It was so bad that at one point I apologized to Dr. T, saying that I was at the store buying a new computer, and it was really loud. So then, because he is awesome, he asked me what type of computer I was buying, and I told him a Lenovo, to which he responded Oh, in a disappointed voice, sort of as if he knew something I didn't. So then I was like Are they bad?! Because I haven't bought it yet! (and I've never had one before, but I have had a Dell, HP, and Toshiba, all of which sucked) and he was like, No! I just really like Macs. So I told him I had tried to be a Mac lover, but even after personal tutoring and group therapy, I hate Macs, and he was like oh, okay. LOL. I guess it's like implants; it's a personal preference. :) (And, by the way, I'm kidding about group therapy.)

Anyway. I think I heard/understood/absorbed about 50% of what he told me, but the bottom line is that he's not okay proceeding with this surgery until I get my blood completely checked out, by a hematologist of his choosing - 'one of the best anti-coagulant hematologists there is.' As he said, 'I just really don't want you to get another blood clot.' Dr. T said he had been e-mailing back and forth with his colleague about my case and that the final conclusion was that I need to have a full work up, but 'I think we can do this before your surgery.' I think. Not, We can do it, like he said at my first appointment with him. Sigh. And, of course, there's always the 'What if?' factor. If I'm okay, and I don't have a clotting disorder or any other factor that puts me more at risk than average, he thinks we can get an all-clear before August 26th. But what if I don't get an all-clear? What then? We didn't discuss this. 

And again, I'm grateful he is being thorough, and I have to admit that I am curious, after all these years, to get a more precise explanation of my condition and its possible significance. As Dr. T told me, 'I'm just uncomfortable that you got this diagnosis with no details.' Honestly, it's something that has been given so little attention throughout the years that I almost stopped putting it down when I filled out medical history forms (especially since there is no specific question about it; I have to put it in 'other'). In fact, I could have easily forgotten about it or convinced myself that it was something that I had made up, except that when my son was born, someone (can't remember who) told me, 'We discovered he has something called hemoglobin E.' That person was about to explain to me what hemoglobin E was when I said I knew what it was because I had it. And that was that.

Of course, I don't want to have a blood clot during this surgery. If I did, the best case scenario would be that the flap transplant wouldn't work, and it would all be a waste. The worst case scenario would be that I have a pulmonary embolism or stroke, and become a brain-dead vegetable. Or I could die. But the former would be worse, in my opinion. So I appreciate the precautions. (On a side note, I wonder how much plastic surgeons pay for malpractice insurance. I bet it's a lot.) However, now I am at a point where the fact that this might not be possible for me is a reality, and UGH, that is just a low I cannot handle right now, especially not after the high I've been on. 

So while I'm still praying for the best, I'm not feeling as hopeful as I was earlier in the week. And one way or another, these next five weeks are not going to play out as I planned, and will be filled with a lot of uncertainty. If it all works out in the end, it will be okay, but if it doesn't, well... I don't even want to go there.