Positive Margins

My surgeon's NP just called to let me know that three out of the four margins from my re-excision were positive for DCIS.

WTF?

I repeat... WTF?

I went from one positive margin to three? I don't even know what I feel right now, except like crying. But I don't know if the tears are from anger or frustration or exhaustion or fear or resignation or shock or what. I was definitely NOT expecting this. In fact, since this whole ordeal began, this was probably the news I was least prepared for.

Fuck.

That's all I have to say right now: fuck.

Pardon my French.

What Lies Ahead

I had a horrible night last night.

Yesterday being Father's Day and the longest day of the year, the kids got to bed way too late, about an hour after I wished I were in bed. My husband is a really fantastic father, but one thing he absolutely sucks at is getting the kids to bed. I do my part, then... an hour later, he does his part. Anyway, around 9:30, when he was still putting the kids to bed, I decided to fold some laundry and watch Seinfeld. Around 10:30 PM, I took half a hydrocodone and immediately fell asleep. I woke up at 3 AM, tossed and turned for a few minutes, then got up and went to the bathroom. Usually if I go to the bathroom in the middle of the night, it's more of a sleepwalking/sleeppeeing exercise than anything, and I can go right back to sleep. But this morning I lay there for another 30 minutes before giving in and realizing there was no way I was going to sleep.

I was wide fucking awake, and my mind was racing in a million different directions. So I've finished surgery, hopefully. What next? This whole time I've been so focused on the surgery and so overwhelmed with work and accepting my diagnosis and educating myself about breast cancer and researching doctors and working through family bullshit and adjusting to my new reality and yada yada yada, that I've had little time to think about What Lies Ahead. And that is mostly a good thing. It is a classic stress management technique to try to stay in the moment. But now... Now I need to contemplate the future. Because the future is here.

I was thinking last night - what if surgery was the easy part? Surgery sounds so major, I just figured that has to be the hard part, especially with chemo out of the equation. And hell, I haven't cooked in, like, ages, because it turns out when you have surgery, your friends feed you and your family. It's not a bad gig. LOL. And as I educate myself about radiation therapy and its side effects, and anti-hormone therapy its side effects, I worry. I mentioned I didn't feel fully prepared for just how bad the lumpectomy was going to be, and in reading through the message boards on breastcancer.org, it seems like a recurring theme with radiation and hormone therapy that many women weren't prepared for how much they were going to suck. As I lay in bed last night, I kept thinking of how I feared the side effects of chemo so much, that any treatment that didn't make my hair fall out would be a-okay with me. I now realize that's not the case. Like... I have suuuuuuper terrible and sensitive skin - how awful will radiation be for my skin? And y'all already know I am a fucking bitch, so golly gee, I just can't wait to get on some medication that causes mood swings and insomnia. That's going to rock.

Probably the worst part is that there is really no end in sight. This is forever, my new reality. Even in 10 years, if I stop taking medication, I will forever worry about the cancer coming back. Many people say that they will do whatever it takes for peace of mind - have their breasts cut off, their ovaries and uterus taken out, radiation, chemo, the whole nine yards. But I will never ever have peace of mind again, no matter what I do. For the rest of my life, I will fully expect this cancer to come back, and the next time in a place that will kill me.

It is a weird thing, having cancer, then having it cut out of you. In theory, I should no longer have cancer, yet it seems too early to go around telling people, Yeah I had cancer, last month, but it's gone now. At the same time, saying, I have cancer sounds so morbid. Like Hey dude, I have cancer, be nice to me, I am dying! Is cancer like alcoholism - once an alcoholic, always an alcoholic, even if you've been sober for 20 years? At what point can you say you had cancer, past tense? I don't feel like I will ever be there, and that is an awful feeling.

But, onto more practical news. There is no point in wallowing in self-pity. We are all dying, after all, some of us faster than others, and some of us of things we won't ever know about until the moment they kill us. Knowing one of the dangers that lurks on your personal horizon is not necessarily a bad thing.

I finally got out of the bed around 3:30 AM and went downstairs to the office and spent two hours watching gymnastics videos from the 2004 Olympics. LOL. By 5:30, it was light and the birds were chirping, and I was tired, so I went back upstairs and got in bed. Of course the kids were up at 6:30 after a slumber party in my daughter's room with 10 kids total (eight of them imaginary, mind you). So basically I was a zombie all day. I had a follow-up appointment with my surgeon's nurse practitioner, and my mom came and watched the kids. Unfortunately, I'm sure whatever amends we made were erased because I was soooo tired and really didn't feel like talking to her. I'm sure she interpreted it as me being angry. Whatever.

My appointment was fairly useless. The pathology report from my surgery still isn't back (WTF?), so the NP and I briefly talked about my pain, and what type of bra I should (or should not) wear to help aforementioned pain. She didn't really have any amazing insights; I mean, I've tried just about every possible type of bra and they all have their downfalls. I left with an ace bandage wrapped around me, which kind of helped my breast pain, but in the end was too weird. So it immediately came off when I got home.

The NP also said that I have a little fluid build-up in my surgical site - a seroma. However, it is not really worrisome. It is not infected, and sometimes seromas can be good, because the location of the lump fills with fluid, which is like a natural implant, and gives 'a better cosmetic result.' LOL. It's only really a problem if the fluid build-up causes pain and prevents healing; then you need to have it drained, which trust me, isn't high on my list of priorities. I realized, though, when the NP was talking to me about seromas, that I really don't care about the cosmetic results. I mean, I sort of do I guess. Less disfiguration is always better. But it's not as if anyone really sees my bare breasts enough that I would think, Hey, I'm so glad I have fluid build-up where my cancer used to be because now I don't have a dimple in my boob, and I didn't even have to get an implant. I mean WTF? I guess it goes with the lumpectomy territory. Everyone assumes if you opt for lumpectomy, it is a choice that is ultimately grounded in the cosmetic outcome, when sometimes it's really more because you didn't want to go through the pain of having your entire boob lopped off.

Anyway, I'm now five days post re-excision lumpectomy and I have to say I feel pretty good. I've been able to settle into a fairly normal routine, with a few restrictions, and I'm not even a week out. All in all, it's good news, but one thing is for sure - I'll be taking an Ambien tonight.

Post Re-Excision Lumpectomy: Day 2

I've come to the conclusion that Day 2 post-surgery is my least favorite, at least of the surgeries I've had, which admittedly is a very small number. The day after surgery, you're not expecting/expected to feel good, and you can lie around all day and not feel bad about it. But by the second day, you feel much better, and you feel antsy, and you want to do stuff, only you don't quite feel good enough, and your husband goes back to work, and you have to take care of the kids, and overall you don't really get any rest despite the fact that you still need it. And it also seems like your pain is actually worse than the day before, but that's probably because you aren't taking pain meds and you're up and about doing a lot of stuff that causes pain.

All in all, I feel a little cranky. Originally, my husband told me he was taking the day off, but then he didn't. I get it, I really do. My husband's boss has been great about giving him the time off that he needs to take care of me, take care of the kids, take care of Stuff, and for that I am truly grateful. I have no idea how people with inflexible jobs and jerkwad bosses could do this. At the same time, the very thing that makes jobs flexible also makes them not flexible. In my job, for example, I can 'take the day off' and not grade papers, but those papers have to get graded eventually. If I don't grade them because I'm off having surgery, that's my prerogative, but I still have to grade them at some point. It's not like a shift in a department store where you just get someone to cover for you, then go in the next time and pick up right where you left off. My husband's job is the same way; he doesn't work regular 8-5 hours, but in the end, he has to get stuff done, one way or another. And so... he worked today. I woke up around 8:00 and went downstairs to find my husband on a teleconference and my son playing in the sandbox, at which point I felt obligated to feed my son breakfast and keep him out of my husband's way. And that's about how the rest of the day went.

I really shouldn't complain, though. While I do have some intense, throbbing pain still, I have it pretty good. My parents came over this afternoon and took the kids on a bike ride to get some ice cream. Since my son is only three and just recently learned how to ride a bike (with training wheels), and the ice cream place is almost a mile away, this took a couple of hours. Around the same time my parents came to get the kids, a stellar friend came over with food for dinner. (Gee, don't you feel sorry for me?) After she left, I debated whether I should take my long-awaited 48-hour-post-surgery shower, or try to grab a nap. I eventually opted for the cat nap. And now, my husband has extracted himself from work and taken the kids to the pool, so I think I'll head for the shower.

Post Re-Excision Lumpectomy: Day 1

I've alternated today between feeling super tired and kind of out of it, and feeling really good ( = went downstairs, outside, walked around my yard, and even pulled a few weeds). I woke up at 6 AM, took a hydrocodone, then - more out of fear than actual pain - took another one at 10 AM. I still have a lot of throbbing pain, which I don't remember from last time, but I've been able to manage it well all day with ice. Overall, I'm still thrilled with how good I feel.

I feel like during the original lumpectomy, I was still reeling from the shock of my diagnosis and in the hysterical mode of GET THIS SHIT OUT OF ME! This time around, there was a much more ho-hum feeling. I know that due to the timing of my surgeon's vacation and our vacation and the ability for us to schedule appointments with various med oncs, there was not much flexibility for when this surgery would be. My surgeon had to squeeze me in, and... it definitely had that feel to it. Dr. L was her usual wonderful self, she just seemed a little more rushed than usual. From a patient's perspective, surgery is such a big deal, you sort of imagine that everyone's day centers around you and you alone, and it's hard to imagine that your surgery is so simple and routine that it's something your surgeon is squeezing in during what is normally her lunch break. It's a little unnerving to think that before she carves you out, she probably did at least 2-3 other surgeries. But then you have to figure that if it didn't work that way, it would probably be 2-3 months before you could get in for surgery.

Anyway, my surgery was tentatively scheduled for 2:15 PM, with a 1:00 check-in time. However, during my pre-op phone consult, I was asked to come in at 12:30 instead, because there was a chance the surgery could happen earlier, depending on how my surgeon's day unfolded. In the end, I think it ended up being pretty close to 2:15, since I didn't get to even start my pre-op stuff until 1:00. And apparently my surgeon had another surgery after mine, because normally she checks in with whoever is out in the waiting room immediately afterward, but she didn't. The good news is that I was awake and semi-coherent by the time she came by, so I got to hear the low down and ask her questions.

Waiting all morning was torture. I was hungry, not to mention thirsty, especially after a, um, fun night with my friends the night before. LOL. Supposedly I could have sips of water up until 8 AM, only I woke up a little after 8 AM feeling slightly dehydrated, so... basically I was thirsty the whole day. My husband had a lunch meeting he just couldn't miss, so my mom took me to the surgery while my dad took the kids. Needless to say, that was interesting. I've written about my parents before, and while it was good they could be involved and feel helpful, it definitely added an element of stress that would not otherwise have been there. Fortunately, my mom behaved herself very well. Unfortunately, my son... not so much. Let's just say that it will be a long, long time before my dad watches the kids again. My parents weren't going to tell me that my son had been a hellion, but of course my daughter informed me after I asked. My son had actually been a pain all morning, and was in the middle of a mega meltdown when my parents came over, which I didn't tell my dad, because I didn't want him to be freaked out about having the kids by himself. Eh, you win some, you lose some.

Before going in for surgery, I had the usual encounters with the patient care tech, nurse, anesthesiologist, and surgeon, and found that when you have surgery mid-day, no one is as chatty, and everyone seems like they can't wait for the day to be over. This is slightly unnerving, but I found solace in the fact that I was having a very simple, 30-minute procedure done, and not a double mastectomy with reconstruction.

I mentioned being a little weirded out the last time because I was fully conscious when they took me into the OR. This time, since the OR was only about 20 feet from where I was doing my pre-op stuff, the nurse just had me walk myself into the OR. I was actually carrying my own IV bag, too, until they realized I wasn't holding up high enough. LOL. The nurse showed me how she was checking herself and another nurse into the surgery on the computer, then had me crawl up and lie down on the operating table. Eventually my surgeon and the anesthesiologist came in, and the anesthesiologist said she was starting the meds that were going to make me go to sleep. I remembered from the last time that it only took 10 seconds before I was out, but this doctor did it in a little different order, I think. She told me one of the meds was going to burn, which I definitely don't remember from last time. When she administered it, I said 'Yooooow!' just to let her know that I felt it. She replied, 'The good news is that you won't remember this,' so I then used my 10 seconds to inform them that I remembered having the LMA taken out of me the last time, even though I wasn't supposed to. LOL. I bet they were super happy when the meds kicked in and I was knocked out. (And for the record, I DO remember the stinging, burning pain.)

And that was it.

I woke up with extreme, throbbing pain all over my chest, so of course my first thought was they had done a complete mastectomy. I immediately held my hand up to feel if I still had a breast at all. Ha. After what felt like forever - it was definitely BUSY - a nurse came over and offered me some pain meds, which helped a lot. Then she asked if I was ready for my mom to come in, and I said that I was not. LOL. After the pain meds kicked in and I was able to go to my Happy Place, they went and got my mom. My husband had also arrived, so that made it a little easier  - though he had to leave fairly quickly again. After a while, Dr. L came by and said everything had gone well and 'You did great!' which I've never understood. How does one 'do great' during surgery under general anesthesia?! Hopefully it is the surgeon who does great, and not the patient. LOL. Anyway, since I'm not going to see her for my post-op visit, since she is going on vacation, I asked her what would happen if the margins weren't clean this time, even though I didn't really want to think about this possibility. She said it really depended. If they weren't clean by just a little, she'd be fine going back in yet another time. But if they weren't clean as in there was carcinoma all over the place, she said she would recommend a mastectomy, adding that, 'You don't have very large breasts, so if there is still extensive carcinoma, you wouldn't get good cosmetic results.' So my mom asked her if she felt optimistic about clean margins, and she said, 'I do!' then added. 'I always feel optimistic!' So... I guess all that is left is to try to feel optimistic and pray for clean margins.

I feel like had to wait around forever before I could leave this time. This was different from the last time, when I feel like they were anxious to get rid of me, and I actually left before I felt ready. Maybe it just seemed like forever, though, because I feel like I was home by 5 PM. I dozed and watched videos for the rest of the night, which is pretty much what I did all day today, too. I did, however, actually get dressed and put my contacts in this morning, which is more than I could do the last time. And now... I am off to pop a hydrocodone and hopefully be able to get a good night's sleep.

Re-Excision Lumpectomy

Wow, that was a long day, but I wanted to write a brief update. I am doing well, and already feel soooo much better than I did at this point the last time around. I am feeling a lot of pain, mostly throbbing pain. When I woke up from surgery I seriously thought they had done a mastectomy, and my pain level was through the roof. This improved fairly quickly after a dose of fentanyl through my IV and two hydrocodones. I didn't get as much pain medicine as the first time, which I think actually helped, because last time I was spinning for the entire day, and that in itself was so unpleasant I think it negated a lot of the pain relief. I got home and got settled about two hours after my first dose of hydrocodone and could not believe I had to wait another two hours until I could take more. (Do I sound like a junkie or what? LOL.) But because I was actually fairly coherent, I was able to manage the pain very effectively with ice and heat. I will definitely be ready for another dose of hydrocodone in an hour, but overall the pain is nothing like the last time. My whole breast, what's left of it anyway, alternates between an intense, dull ache and throbbing pain, but I can move my arm pretty well. Whatever pain I have when I move my arm was already there from before, and I don't feel like this surgery added any additional pain, so that is a huge relief.

I was extremely drowsy all afternoon, and couldn't seem to stay awake for more than an hour or so at a time. I'm a little worried about whether or not I'll be able to sleep well tonight, but... at least I don't have anywhere I have to be tomorrow, and my husband took the day off, so I don't have to worry about the kids. When I got home, I was STARVING, which was actually a good thing, because last time I didn't have much of an appetite for, like, a good 4-5 days. I ate a bowl of soup before drifting off to Seinfeld DVDs, then a friend brought a pizza over (the same friend who brought a pizza last time :)), and I actually ate two huge slices.

I will give a more detailed update tomorrow, but I just wanted to check in and say that I feel So. Much. Better. than last time. I basically feel crappy, but it is typical post-surgery crappy, and so much better than I expected. I am pretty much elated by how much less crappy I feel than I thought I would. I am confident this is going to be a much smoother and easier recovery, and I am extremely thankful for that. Thank you all for your continued love and support - it means so much to me.

Fear of the Known

In what seems like a former life, I was actually a very serious athlete. Although the younger me did a number of sports, my main sports were gymnastics, then diving. Both of these sports involve a lot of fear. When you are trying to learn a new skill, there is the fear of the unknown. Will I do the right thing? Will I get lost in the air? Will I get hurt? Sometimes the first time you try something, it's easier than you thought, and so the second time you do it, you feel more confident. But sometimes the first try is a flop, and your fear is worse the second time around. It is the fear of the known versus the fear of the unknown. The fear of what you know can happen, because it did happen.

When I was pregnant with my daughter, I was confident I would have a drug-free birth with no problem. After all, I have a high pain tolerance! I walked around on a broken foot for several months before realizing it was broken! I've tweaked muscles, torn cartilage, and done all sorts of mean and nasty things to my body and still soldiered on! But, despite this, once back labor set in, I said yes to the epidural faster than you can even say epidural. LOL. Unfortunately, immediately afterward, my blood pressure dropped, my daughter's heart rate dropped to 40, and she was vacuumed out in an emergency procedure just a few minutes shy of a C-section. Coincidence? Maybe. But when I was pregnant with my son, I was dead set against the epidural. Dead set. Of course, remembering the intense pain that came with labor that caused me to beg for drugs like I have never ever begged for them before, and knowing that this was not an option for me, made me dread labor the second time around. Fear of the known.

I feel the same way going into surgery #2 as I did going into childbirth #2; it's almost as if I feel more anxiety the second time around. This is based on what I know can happen, and did happen. The first time around, I was pretty surprised that the recovery was far more hellish than anyone or any source, including Dr. Google, had prepared me for. Part of me wants to believe the second time won't be as bad, since at least I won't be having the sentinel node biopsy. I'm also hopeful that perhaps the pain from surgery #2 will just morph with the pain I'm still having from surgery #1, without adding more pain. But I'm also prepared for the possibility that my pain levels will go into exponential phase once the pain from surgery #1 and surgery #2 are combined. All in all, I think knowing the possible outcomes is giving me more anxiety this time around than the first. I feel like I am much more of a wreck than I should be over what I hope is pretty ho-hum surgery. Fear of the known.

Fortunately, I had a really great evening with two amazing friends and their families to distract me from my anxiety. And since I have five minutes before my food and drink ban sets in, I will go take a sleeping pill and hope that gets me through tomorrow.

How to be an Amazing Friend

I invited two of my friends over to have a post-dinner, pre-surgery drink with me tomorrow night. My surgery is not until 2 PM on Wednesday, and I can't eat or drink past midnight, so I figured I might as well eat and drink, or at least drink, up until then. HA! Drinking is no fun alone, though, which makes me grateful to have friends who will drink with me. :) Then, one of the friends I invited offered to bring us dinner, and the other offered to bring drinks; how awesome is that? I feel like such a freeloading deadbeat! As I was briefing my husband on our plans for tomorrow, he mentioned how sweet my friends were, and I replied, 'Yeah, I should get cancer more often!' LOL.

But honestly, since this whole ordeal began, I've realized that I am friends with some super amazing people - both far away and local (and if you are reading this, chances are that you are one of them. :)) While it kind of sucks that it took a stupid cancer to drive this point home, it is better than getting to this point and realizing that in addition to having cancer, you have no friends. I have had some very intense moments in the past six weeks, which has changed my relationship for the better with a lot of people, including my husband (not that our relationship was bad, it is just a little different now... in a good way). I mean, even if I weren't having surgery on Wednesday, it would still be fun to have drinks with friends on Tuesday night, but it's not something I would normally arrange to do, so... silver linings.

And because this is the way my mind works, while I'm extremely grateful for the outpouring of support I've gotten, I'm also feeling kind of guilty. It reminds me of the Seinfeld episode where Jerry gives an unlimited gift certificate to a hair clinic to a friend with cancer, only it turns out the friend doesn't actually have cancer, but doesn't tell anyone because people were so generous when they thought he had cancer (though I can assure you that I really do have cancer lol). But my guilt is not just because I'm feeling like a freeloading deadbeat - some of it is because I am a recovering Catholic, ha - it is also because my experience now is making me feel like I might not have been the greatest friend/colleague in the past. For example, when I was in graduate school, one of the women I worked with a lot ( = not a close friend, but a close colleague, one with whom I talked to at length pretty much every day), told me that she had had breast cancer in her early 20s. She was in her 30s when we worked together, and was about 10 years post-cancer, but I realize in retrospect that I totally blew this off, not really realizing what a hugely traumatic ordeal it must be to have breast cancer when you are 24 with young children. I am almost 100% positive I probably said something stupid, considering that all I really remember when she told me this is that I was staring at her chest trying to figure out if her boobs were real. (And unfortunately, even though this might sound humorous, I'm embarrassed to admit that I am not kidding at all.)

I have since moved away, but this woman and I remain friends on Facebook. A few years ago, she posted that she had a recurrence of her breast cancer, and ended up opting to have a bilateral mastectomy. Although she isn't a close friend, she is actually the very first person I thought of when I was diagnosed with breast cancer. I actually went to great lengths to go back two years on Facebook to make sure I hadn't written anything stupid when she shared this news. Fortunately I hadn't, but at the same time, I didn't say or do any of the things that people have said or done for me that were the most helpful and comforting. And I regret that. Of course, I didn't know any better; how could I? At the same time, when you are the one going through the ordeal, you don't really stop to divide your friends into 'amazing friends' and 'people who could probably be amazing friends if they knew better.' Given that I'm pretty sure I fit into the latter category, I'm amazed at how many amazing friends I have. How do they know what is helpful and comforting when I myself don't even know it until someone does it?

I spent all day at work Skype-interviewing potential candidates for what is essentially the equivalent of my job. Jobs in academia, like many other things, are extremely competitive now. I am good at my job, but I am not sure I would have even been interviewed in this batch of candidates, nor am I sure I could even give a good answer to the questions we asked our candidates. I was hired with far less experience than a lot of these candidates, so I don't believe that extensive experience is everything. (As one of my gymnastics coaches used to tell me over and over, practice doesn't make perfect; practice makes permanent. Only perfect practice makes perfect.) At the same time, having experience obviously makes it much easier to say and do the right things - whether it be answering questions for a job interview or helping a friend as she deals with cancer.

So, as a public service, I thought I would share a list of 10 things I vow to do in the future to be an amazing friend, or at least work my way in the direction. Not that I am wishing crises on any of my friends, but if they should occur, I will try to do one or more of the following, which have certainly been a great comfort and help for me:

1. Bring them wine, send them wine, or send them a gift certificate to a wine shop. 
2. Drink wine with them when they feel it.
3. Drink something else with them if wine makes them sick.
4. Cook for them, or buy food and bring it to them, or send them a gift certificate for food.
5. Arrange to have other people bring them food.
6. Make sure their family has food, even if food makes them sick.
7. Buy them frivolous stuff they don't need, but that makes them feel better.
8. Go shopping with them when they want to buy frivolous stuff they don't need to make themselves feel better.
9. Buy them stuff they do need that they don't know they need. (One of my friends bought me some super soft camisoles because she had another friend who had breast cancer who told her this would be helpful. Another friend gave me a giant body pillow because I couldn't sleep on my right side because of my hip or on my left side because of my breast. I didn't know how much I needed these things until I had them. :))
10. Text, e-mail, or leave comments on their blog regularly.

I am sure I will have more to add as time goes on, but hopefully this captures my gratitude, and will help me to not be a deadbeat friend in the future. Until then, I am going to enjoy drinks with friends tomorrow night, and try to focus on the half of the glass that is full.