The Backstory (Part 3)

January 11, 2007: This is the day we head back to the surgeon. I'm curious to hear what he has to say about the CT scan. Mike and I have no firm decision in mind but lots of questions. We bring our lists and plenty of other things to do. We'd forgotten how much waiting there can be so we are better prepared this time.

Our appointment is at the new cancer center building. It was written up in the paper and is supposed to be beautiful and have lots of in-house resources for cancer patients and their caregivers. We get there and refuse the complimentary valet parking. A nice touch but we leave that for the patients who really need it. We go inside. The lighting is mellow and the reception area has a baby grand piano in it. Lots of volunteers are standing around to help us find our way. I sign in at central reception and wait to be buzzed on the pager I was given so I can pay my co-pay. Mike finds the coffee shop and gets a cup. I don't feel like having any. Mike then finds the pamphlet area where they have free info for patients and caregivers - how to cope, what to expect, specifics on many different kinds of cancer. Mike takes a bunch of stuff for us to look at later. I look in the window of an empty shop that will soon be a beauty and wellness salon for cancer patients. I make a mental note to take advantage of this if I have to have chemo and lose my hair again. The eyebrows and lashes go too, so maybe they'll have tips on how not to look surprised all the time; Mike says this is the effect and I actually want to laugh thinking about this. He's so good.

I still haven't been buzzed, so Mike wanders off and discovers the computer room, where patients and caregivers can check their email or surf the internet while they're waiting. Another nice touch. Just as I call up the UA website my buzzer goes off. It says "we're ready for you at the South Pod." I haven't paid my co-pay yet so I'm not sure whether to go the South Pod. I go back to check-in and explain. The woman I talk to doesn't seem to know what is going on. Another woman further down comes forward and says she checked me in already. I say "what about my co-pay?" I gather from what she says that she was just going to bill me because their computers are down. She says if I have cash, though, I can pay. I pull out a twenty and she says she needs exact change. I go find Mike, get a ten, go back and pay. I'm a little cranky now. Clearly they need time to work out the glitches here. I feel bad for being cranky so I try to snap out of it.

A helpful volunteer tells us how to get to the South Pod. We check in there and wait only a few minutes this time before we're called back. An aide takes my vitals. No surprise that my blood pressure is high. The room we're taken to this time is much better than our last closet. Everything is new, the lighting is soothing, and there are TWO chairs. Yay! Mike and I settle in to wait - starting a crossword puzzle together in the book Joey gave me for Christmas. It's very quiet and we think we must be the only patients there so far.

I hear heels click out in the hall and I think this must be my oncologist. It is. She greets both of us with hugs and compassion, asks how we're doing. She's happy that she's caught us before the surgeon. She writes the order for the PET scan she recommended on the phone yesterday. She also writes an order for a bone scan (see Mike's post on this). We only get to ask her a couple of questions before my surgeon arrives. One is whether she can give us any kind of estimate as to whether I'll have to have chemo. She says she can't really say until she sees the pathology on the tumor. She says her feeling is that I will probably have to have some. She emphasizes the word "feeling" and we understand that she can't really predict. The other question we start to ask is, of course, about mastectomy vs. lumpectomy. She confirms that survival rates are the same; she confirms the risk-of-recurrence stats. Then she says, "But this is a new cancer".

At that point my surgeon and his resident walk in - an entrance a bit like a tornado. He greets my oncologist and says, "Do we have the CT results?" She says "yes" and hands them to him. He looks at them and says, "Okay, so it's negative." She says, "well..." and tries to say more but he inadvertently talks over her. He looks flustered and it's clear that he's trying to recall my situation. I'm relieved that he read the CT results as negative, but grateful all the same for my oncologist's caution; I'll have the PET scan like she says, just to be sure. He starts reading my chart as she's trying to fill him in. She mentions that I'm BRCA1. He says "she's BRCA1?", and is still clearly trying to catch up. At this point, my oncologist says she doesn't want to intrude on our appointment with him and she will try to see us later. She hugs me again on her way out.

My surgeon apologizes for being distracted. From what I gather he was just discussing a pancreas patient or at some kind of pancreas cancer meeting. I know this cancer is one of the most deadly. I don't mind that he was a little distracted. Now he sits knee to knee with me, holds my hand, includes Mike in his gaze and asks, "What did you decide?" I look down, not wanting to meet his eyes, and say "I don't know." Mike has the list of questions and we start asking them. He answers them readily but midway down the list, still holding my hands, he says, "You're trying to make this decision based on numbers; if the answer were in the numbers, we'd be telling you what to do. You need to make this decision with your heart." I get teary now. The resident (a very nice woman) says, "What does your gut tell you"? I say "My gut doesn't know; it's all twisted up." My surgeon says he thinks I want to keep the tatas and that is okay. The resident says, "There is no wrong answer here." I look at Mike, who says, "You don't burn any bridges this way." I say, "Okay."

After saying this, I try to assess how I feel. Does this feel right? I know I'm not as terrified as I was before. That must be a good sign, right? I ask him what happens if, after having the more conservative surgery, I am a neurotic nightmare - always worrying about recurrence to the point I can't function or drive myself and others crazy. He says there's no problem. We do the mastectomy then. I feel reassured by this but in the back of my mind I have the sneaking suspicion that my other doctor would encourage me to do the mastectomy now. I know waffling now isn't going to help. I spoke the words. It's best if I just go forward and don't look back. I'm pretty sure chocolate would have helped at this point, but we don't have any.

The decision apparently made, my doctor says, "Okay, now I have to say something else scary." Basically, one of the risks of detecting a cancer early is that they can't guarantee to get the cancer on the first try. Mine was detected by MRI, which means he can't feel or see it. He says he doesn't want to see it anyway because that means he got too close. To increase the chances of success, they'll do what is called a wire localization. When I had the biopsy, a titanium clip was inserted at the tumor site. Now they can use mammography to see the clip. They can then insert a wire there before the surgery so they have a better idea where the tumor is. The surgeon says even with the wire, there is no guarantee. While I'm still under, they'll Xray what they excise to see if the clip shows up. If it doesn't, they have to go back in. They also check the margins of the excised portion to see if they are clean (clear of cancer cells) or dirty (still show signs of cancer). If the margins are dirty, they'll have to do another excision. They can't be certain in either case until they do the full pathology (after the surgery is over); so even if they think all is well, the more fine-grained pathology (that comes about a week later) could indicate otherwise.

The bottom line is that if they have to keep doing excisions or they can't be sure they've gotten the tumor, then they have to take the whole tata off anyway. They assure me that in no situation would I wake up with no tatas. If it came to that, they would wake me up and we'd reschedule the surgery for another time. I knew this was a possibility from what I had read, so I'm not as scared by this as I might have been. I think there's a difference between having to take the tata off and being given a choice. If they say it has to go, it has to go. In my case, they'd take both tatas because of the previous cancer. Okay, I'm already starting to second guess my decision.

The doctor then says he'll do a sentinel node biopsy, a procedure he didn't do 7 years ago. This has the potential to make the lymph node removal less drastic. The idea is that if the sentinel lymph nodes have cancer in them (usually there's only one or two), then so might the rest. If they don't, then it's a good bet the cancer hasn't spread to the lymph system. I'm happy he's doing this because there's less risk of lymphedema the fewer the nodes they remove.

Our questions start to dry up. I start to worry about more trivial things, like them finding a good vein for the IV. He looks at my hand and says it will be okay. The resident says to make sure I keep my arms warm the day of the surgery. This apparently helps. Who knew? I worry about being sick when I wake up. This usually happens to me if they don't put an anti-emetic in the drip automatically. He says they don't and the resident says to be sure I tell the anesthesiologist I've had trouble before and they'll take care of it. I worry about compromising the lymphedema in my right arm. Can they protect it? He says they can; he says they'd rather do the vitals and IV on the opposite side from where they are cutting but he says it can be done on the same side. At this point, he looks at my two arms, takes some measurements and tries to convince me that I don't have lymphedema. I let him talk but know I do. This is the one part I find odd and a little worrisome. I was diagnosed for this a long time ago. Although it is mild, my hand definitely swells up from time to time. He doesn't measure my hands.

At some point, we stand to talk. He puts his arm around me and gives me a squeeze. It's comforting and we stand like that for a while, facing Mike, as he asks about our work, about Mike's sabbatical (poor Mike; what a way to spend it). Because UMC is a teaching hospital, he's curious how it works for us. He says he's never had a sabbatical. How does it come about, he asks? He also asks whether I need to work. We say I'm on medical leave. Mike says it's like taking sick days. The surgeon says he doesn't have any sick days and doesn't take vacation much either (although his wife would like him to). He's a very pleasant man. A tiny bit blustery sometimes but ultimately compassionate. Someone who is taking the time to get to know us again. This makes us feel like we're in good hands. Plus, my last surgery went really well. You can barely see the scar. I hope for the same good results this time.

The surgeon leaves us and the resident sits down. Mike asks if, despite what the surgeon says, they can protect my lymphedema arm during the surgery. She says they can and that even if I didn't have it, my lymph system on that side has been disrupted and she would recommend not compromising it anyway. She says lymphedema is a life-time risk, which I didn't know. Mike says, "Well, after this surgery, both sides will be compromised. " Well, dang. That sucks. I hadn't thought of this before.

The resident, also knee to knee with me, seems to know exactly what I'm thinking. She says, "Now you have to promise not to second guess yourself." As I've already been doing that, I say "Nope. Can't promise that." She says, "Yes, you can. This is a good decision. Right now you are going to take my hand and look into my eyes and promise me." I do. It makes me feel better, stronger. She's a very nice doctor, too. I feel pretty lucky.

She gives us paperwork and now have to go down to the old cancer center to schedule the surgery. I also need to get an EKG and some bloodwork done. If we do that today, then we don't have to go back to UMC until the day of the surgery. The surgeon walks by the door and sees that we are still there. He stops to talk with us some more, tells us about his family, a trip he took to Croatia where his wife his from. I say "You did go on vacation!" He laughs, tells us a little bit about it, and ends up chatting with us about work again. He wants to know what I do. When I tell him I work on language acquisition he has lots of questions. We enjoy talking to him but I can see his resident and another staffperson hanging about trying to get his attention (unsuccessfully). Finally, the resident says "I hate to take you away but you have other patients to see." He's a bit chagrined and says good-bye. I leave feeling like he will take good care of me.

Before we head down to UMC, we stop by my oncologist's "pod". We wait a little while to see if she can squeeze us in but after 40 minutes decide to leave. We haven't eaten and we have all the other things we need to do. We leave a message for my oncologist and also leave the orders for the bone and PET scan. The aide says someone will call us with appointment times. I am grateful not be teaching as this makes my schedule more flexible and I can just go whenever they tell me to. My students are very understanding; they all know that meetings with me might change - although it hasn't been necessary so far.

Instead of heading to UMC directly, Mike takes me by the Coffee Bus. We get a bite to eat and my favorite coffee drink. Does he know me or what? After that, we head down to UMC to take care of the other stuff. This actually goes quickly. My EKG is normal, they take my blood without any trouble and my surgery is scheduled for the 26th of January. Still, it has been 6 or 7 hours since we first arrived at the new cancer center. A long day.