My Name is Megan, and I'm a Control Freak

Today we had a meeting with the surgeon. Although I've fielded some suggestions, nothing quite conveys the sense of his personality and I'm still not really sure what to give him as a nickname. Oh well.

The whole point of today was to review the surgery, get me prepared, and I thought we were supposed to schedule the date. This last point is something I've really been hoping to accomplish. You see, recovery is going to take quite some time, and I'm a very busy lady. If I'm going to be out of commission for a month, I'd like to know exactly which month that will be. That didn't happen today, and I kind of got worked up about it.

Let's take a step back. About a month ago (give or take), I decided that I am going to have a bilateral mastectomy. Yes, I am going to have both of my boobs surgically removed. It wasn't an easy decision to make, especially for someone so notoriously bad at making decisions. I don't like making irreversible decisions, and this is one that I cannot take back once it's done.

Coming to this decision was different for me. I did lots of research and thought a lot about it, and I was getting nowhere. Everyone offered their opinion, and it was basically the same, but stewing about it wasn't helping. Then, I stopped thinking about it. Eventually I came to realize that "beating" cancer wasn't something that concerned me. People would say things like "I know you'll beat this," or "You're going to fight this," or whatever. And these words sounded strange to me (not that I mind people saying this - I appreciate the support and the vote of confidence!). But to me, there was never any question about whether or not I would "beat" it. At no point did I feel like I was going to die. The real question was, what was going to happen afterward? What would my life be like? Would it come back? When?

When I allowed myself to stop thinking about it and to start feeling about it, I knew that my primary focus was preventing this from ever happening again. And really, a bilateral mastectomy is the best way to do that. In addition, I have some pretty big concerns about getting lymphedema. If I got cancer in the other breast (and that's where it's most likely to come back, by the way...) there is a risk that I would have to have the lymph nodes removed in that arm, too. It's bad enough having it in one arm - I am immensely fearful of having it in both of my arms. And another thing... even though I had nearly a complete response to the chemo, my surgeon had concerns about other calcifications in my breast that would cause him to lean toward a mastectomy over a lumpectomy. Honestly, once I am losing one, it seems kind of strange to keep the other one, especially considering that it would be more likely to return in the opposite breast.

And you know what? I'm tired of thinking about it. I feel confident that one day, I will be able to look at myself in the mirror and get used to the results. I don't know if I could ever not think about cancer if I knew that I didn't do everything possible to prevent it from recurring. It's been 4 months already and I haven't stopped thinking about it for a single second of a single day. It's like a background process in my brain, and I'm tired of it.

So, anyway, I've also decided to have reconstruction. Since I'm going to have radiation, the reconstruction cannot happen at the same time as the mastectomy. However, my plastic surgeon will place tissue expanders in my chest after the demolition as part of the same surgery. It's pretty neat - my surgeon will begin by removing my left breast and lymph nodes, and then when he moves to the other side, my plastic surgeon will begin immediately on the left side, placing the tissue expander in.

After the surgery, I will have 4 drains coming out of my chest for 2-4 weeks (called Jackson-Pratt or JP drains). These drains are used to remove fluid from the body (lymphatic fluid, and other stuff I don't remember) and it's all part of the healing process. When the amount of fluid that comes out of the drains daily is less than a certain threshold, I can have them removed. While the drains are in, I won't be going to work, and I probably won't be interested in socializing much. I'm also not allowed to shower while the drains are in, so I don't think people will be wanting to socialize with me, either. I think we'll really make the most of our Netflix subscription during those few weeks.

During this time, there are some exercises that I have to do to prevent tightness in my chest. As I understand it, these exercises will also help prevent lymphedema, so I'm going to pay a lot of attention to these.

Everyone in the surgeon's office thinks that the hard part is over, but I'm getting grossed out just thinking about all this drain business. I'm really not looking forward to it, and I can certainly point to this as something I'd really want to go through only once in my life.

So, about the scheduling of this fiasco... When I made my decision a month ago, I wanted to make sure everyone involved was aware because originally I was very adamantly against a mastectomy. So, I notified the surgeon's office of my decision and told them that we needed to schedule the surgery and coordinate with the plastic surgeon. When I met with the surgeon today, he said "Yeah, we'll have to choose a date that we're both available, we'll have to find out what his schedule is". Both of them are going on vacation in August. Are you F'ing kidding me? You mean no one did that a MONTH ago when I SPECIFICALLY ASKED about this?

I truly felt like today was the drop-dead date for when I would find out about the scheduling of my surgery. I mean, I have a life to plan here. Yes, I would drop everything to have this done, but is it too much to ask to have everyone open up their planners and put something down in ink (oh, and BTW, let me know as soon as possible)??? Do these people schedule their vacations at the last minute? No. What could I have done to move this along a little better? Kidnap them and with their planners and arrange a friggin' conference?

When I pressed (because I am a control freak, after all), the surgeon threw out a date of September 10th, but that really depends on the plastic surgeon's schedule. I really wish it would be sooner, but I've given up trying to have any influence over this since it's clearly not working.

On the way home, as I was bitching and moaning about the whole situation, I said "These people have to understand that I'm a control freak, and maybe they realize I need to have that". Yeah, I know, it's kind of funny. My mom reminded me that maybe it's me that should change instead of the rest of the world. I dunno, I think it would be easier changing everyone else...

Chemo Round 7

Round 7?! When did that happen? Wow. I'm almost done!!!! 7 down, 1 to go :-)

Anyway, let me update you on how the wonderful world of chemo is doing, and give you some details about some of the ongoing conversations and concerns I have with my doctors.

First, we started the day by arriving a half hour early. I mean really early. Let me explain. My appointment with Mr. Wizard, or his Nurse Practitioner, Julia Child, NP starts at a different time every round (the NP doesn't sound like Julia Child or dress like her, she just kind of reminds me of the way she looks). Anyway, I'm supposed to arrive a half hour early to get my blood drawn for the CBC (complete blood count). At first, they didn't tell me this, and I would just show up 15-20 minutes early, get my blood drawn, and meet with the doctor or NP. Then they formalized the process and told me to shop up a half hour early. Since then, I've been a little inconsistent about how I write this in my calendar.

Anyway, for some reason, I wrote down 9:00 AM in my calendar, but I thought we had to be there at 8:30. Turns out we had to be there for the blood counts at 9:00 and the meeting with the NP at 9:30. No problem - I'm just a half hour early, right? Yeah, right. If only it weren't for the fact that I'm embarrassingly Type A when it comes to these appointments. Why? I dunno - I don't want them to leave me out there for hours on end. Also, I want to get my good room, damnit! The longer I'm out there waiting to see the NP, the greater the chance that someone could take the last big room with a window, and we can't have that.

So, anyway, I see someone that arrived after me get called to meet with my NP. And THAT, my dear friends, is like adding lighter fluid to a pile of smoldering embers. So, the next time I saw the nurse, I asked her if I was in the queue. She informed me that my appointment was at 9:30, but she would see if they could get me in sooner. D'oh! After she called me, I apologized for being a little too Type A, and she just laughed a little - all was well.

During the appointment with the NP, she explained to me that last week my liver enzymes were way out of whack and she would not treat me if they got even a smidgen worse. We then looked at them, and she explained that last time some where at 4x the high end of normal. This time, however, things were good to go. (Hemoglobin was a low, as usual, but we're okay with that). Which makes me wonder... Did I have a beer the night before my last infusion? Or was it the orange juice mimosa and Bloody Mary the morning of? (just kidding!) Oh well - I will have to remember to avoid that next time.

We also discussed something I've been worrying about since my last infusion (in fact, this was the topic of a near full-on freakout mode a week and a half ago - that Rusty is such a sweetheart). It turns out that my surgeon (who I never gave a nickname... I'll have to think of one - I'm accepting submissions) is going on sailing for 3 weeks in the month of August. This is the one vacation he takes every year. The guy works very hard, and I do not want to suggest that he doesn't deserve a vacation, but this poses a bit of a problem to me...

You see, my last round of chemo is July 31st. Yay! I will be meeting with my surgeon on August 4th to discuss the details of the surgery and to schedule a date. From what I've read, the optimal time to schedule the surgery is 3-4 weeks after the last chemo treatment. This gives my immune system time to bounce back so that I will heal after surgery, but not quite enough time to give the cancer the opportunity to grow. The problem is that my surgeon returns from his vacation on August 28th. That puts me right at the 4 week mark, and if my surgery is delayed any more, I'm pushing 5-6 weeks.

I spoke to Julia Child about my concerns, and she did say that they were very valid questions. She then informed me that the person who was supposed to go on the trip with my surgeon just broke his leg, and it's possible (maybe even probable) that he will not get to go sailing. Ya know, as much as I shouldn't be delighting in the misfortunes of others... I guess I kind of am. After all, it's not like he has cancer.

So, although this situation isn't resolved, I'm feeling better about it because I've voiced my concerns in an assertive way. If it turns out that the trip goes on as schedule, Mr. Wizard did say that he's very happy with the response of the tumor, but we'll have to wait for the results of the MRI and the Mammogram I'm about to take tomorrow and Friday. If the response was really good, maybe it's okay to push it out to 5-6 weeks. On the other hand, it may make sense to do an extra round of chemo. I did suggest the possibility of stretching out my last round (as in, doing it in 3 weeks instead of 2), but that doesn't seem to be an option. And, finally, I could chose another surgeon. HELL NO. He's the best, and I want only the best for my boobs.

Anyway, so that appointment ended, and I walked away feeling not completely satisfied, but much better. I then went to choose my room, and I had a glorious room with a window. Yay! Next, it was time for my infusion nurse. We'll just call her Nurse Awesome because she's awesome (I normally have the same nurse, which makes me very happy - when she's not in, I'm not exactly thrilled). Anyway, Nurse Awesome tries to stick me with the IV, and for the first time, it fails. :-( She had to try a different spot, which eventually worked. I'm not really doing this part of the day justice, but it just wasn't a pleasant experience and it's so discouraging. It hurt a little, and the phlebotomist drawing for my CBC earlier in the day had trouble, too - both times hurt. I think my veins are getting pissed. Anyway, it made me cry a little because this was just such a topsy-turvy day. Eventually the IV went in and I got my Benadryl and feel asleep :-) For the rest of the day, everything was pretty standard and here we are.

So, I hope everyone is still reading. I know I've been a bit sporadic about posting lately, but I will dedicate a post on how to get my blogs more efficiently so you don't have to keep checking this website. It's called RSS, and if you don't know how to use it, it will rock your world once you do. If you want to research it in the meantime, I suggest going to your favorite browser, typing "www.google.com" in the address bar, and then typing "what is RSS" in the search bar. jk. (that's what the kids use for "just kidding") I promise to give some instructions soon.