Category Archives: November 2013

Good news/bad news

First off, I want to thank everyone for the mountain of well-wishes and sweetness I’ve received. From people who don’t know me but found my blog, to family members who waited in the waiting room or by the phone, and everyone in between, I’ve been humbled and overwhelmed by all of the messages of hope that were sent my way. That had to have helped. At the very least, it made me feel loved during a time in which I needed a little love.

The first few days were pretty intense, and are very blurry in my memory. I woke up groggy and numb, but aware enough to recognize an old neighbor among the many nurses milling about the post-op room. (What a nice surprise!) For the most part, the hospital staff was all very helpful and professional. I will say that my first floor nurse was a little socially inept. Once finding out I was a psychologist-in-training, she wanted to have an in-depth conversation with me about helping her friend through the grieving process (mere hours after my surgery), and at 2AM tried to insist that we sing my favorite song. When I wouldn’t, she proceeded to pick “Hakuna Matata” from the Lion King to sing for the rest of her shift, trying to get me to join in. That’s when I pressed the morphine drip for some extra help with coping.

The drains coming out of my body having been the hardest part. They are uncomfortable and always in the way, besides just being disgusting. My hope is that I’ll get most (ok, if we’re taking hopes, I’ll go for all) of them removed this next Tuesday at my post-op appointment. My surgeon said the chances of having them all removed at 2 weeks post-op is remote, but I’m hoping anyway. I’m not super looking forward to the act of having them pulled, but I can’t wait to have them gone. All in all, though, my recovery hasn’t been all that painful. For the last few days, I’ve only used my painkillers at night. I’m a little more active each day. Key word here is little; today my big activity, which wore me out, was a 5 block walk. Every day, though, feels a little easier, and I feel a little closer to myself. So far even emotionally I feel just fine. The trick now is not to overdo it — I’m supposed to be restricting my arm movements as much as possible at this point, and that’s hard to remember sometimes. However, this is absolutely made easier by my sweet family. My mom and sister have both taken their turns staying with me and waiting on me hand and foot, and Brian has become an expert in caring for my drains while minimizing the pain.

So, since surgery, I’ve gotten both good news and bad news. I’ll start with the bad news, because I think the good news is bigger and more important.

In my post Two steps forward, one step back, I talked about how my heart had been damaged by the treatment I had been getting. The hope was that my heart muscle would strengthen within a month, and I could resume my treatment the week after surgery. On Monday, I went in for an echocardiogram to see if that had happened. It hasn’t yet. My oncologist got me in to see a cardiologist right away, but turns out there was a good reason why he had an opening the next day; he was quite possibly the worst doctor I have ever seen. He came in wearing a track suit (I will readily admit that I might have found this endearing had I liked him), rarely made eye contact, interrupted me every time I spoke even if I was answering his questions, and questioned every piece of my (very standard) treatment plan, including the fact that I’ve gotten both a lumpectomy and a mastectomy. He also admitted to me that he knew really nothing about cardiomyopathy that is caused by chemotherapy except what he had read that morning, and that he hadn’t read much. He then went on to tell me that (despite admittedly being ignorant on the subject), I would clearly be foolish to continue with any of my treatment plan, including radiation, and if I did I wouldn’t last twenty years. He did a lot of derisive head shaking and very little listening. I wasn’t impressed, and won’t go back.

So my oncologist and I have come up with another plan. We will give my heart another month to recover. I feel good about this, since during this month, my heart won’t have to undergo a major surgery like it did the last. In the meantime, we will find and schedule an appointment with a cardiologist who specializes (or at the very least is familiar with) chemotherapy-induced cardiomyopathy. This will likely be in Spokane or Seattle, since Missoula doctors need to be a little more generalized. If my heart doesn’t “bounce back” within a month, I’ll see the specialist. If it does, I can cancel if I like. I’m pretty confident we can figure this out, and that this is just another hiccup in an otherwise pretty smooth process. From the (somewhat limited) research I’ve done, this isn’t a rare hiccup in my specific treatment plan, which, like I said, is the standard treatment for the type of breast cancer I have.

Okay, now for the good news. Remember how I was lamenting that some stranger was going to dissect my breast tissue for evidence of disease? Turns out, that stranger is my new BFF. My surgeon called me late last week and told me that they found a little bit of DCIS hiding out in the ducts. That’s not a surprise — we knew we hadn’t gotten it all during my first surgery, and while DCIS is localized and practically precancer, it also isn’t very receptive to chemotherapy. But so, it’s fine that it was there, because it’s gone now, due to my mastectomy. In the right breast, there was nothing but benign tumors. In the lymph nodes? Nothing. Remember that two of my lymph nodes were positive for cancer before, so there was this potential it could have spread throughout my body? Well, it doesn’t look like it did. It looks like all of those months of chemotherapy, all the nausea, all the fatigue, all the irritation and terrible itching…. those months were worth it. They did their job. And because the DCIS that was found has been removed… it’s possible I’m cancer free right now. We still plan to do radiation, in case there’s some undetected rogue cells somewhere, and because that’s part of the treatment that’s associated with the most positive outcomes, but it’s possible I have no undectected, rogue cells. It’s possible I’m sitting here, typing, for the first time in who-knows-how-long, without a trace of cancer in my body.

And that’s worth all of it.

Through Surgery!

For all of you who have been waiting to hear about Lauri’s progress, as of about 5:00 pm, she is out of surgery. Everything went well – Dr. Moline reported that it was all positive – and she is alert and doing fine. Brian and our parents are with her right now as they wait for her to be transferred to her hospital room. She’ll be at Sacred Heart in Spokane tonight and tomorrow night and then Lauri, Brian, Miko and our mother, Shirley, will drive back to Missoula. Our mom will be with her for the rest of the week while she recovers at home and I will be with her next week.

Lauri was admitted this morning at 10:30 am. Her surgery was scheduled to start at 12:30 pm, which it did.

As I get any additional updates, I will post them.

Thank you so much for all of your kind thoughts, words, deeds and love. I know that it has really eased the hearts of Lauri, Brian, Miko and the rest of us. Knowing that Lauri has so many people’s kind intentions supporting her through this experience is a real blessing.

Anticipating surgery

I’ve been struggling with how to write this post for some time, knowing that it was inevitably coming. On the one hand, this feels so incredibly personal to me, and I feel some unease in talking about it in this somewhat public medium that is read by people with whom I normally maintain some sense of boundaries. Like my professors. Or my parents. Or Miko’s teachers. And on the other hand, writing this blog has been such a gift to me, for which I have been doubly reinforced. First, by the act of writing itself; sharing my personal process has been instrumental in moving me through it. Creating something, even if it’s just this electronic account of my feelings, during a time in which it is all too easy to only think about sickness and death, has fed me in a way I can’t quite describe. And second, by the gracious and generous responses I get from people who read it. I feel so priveleged that I get to put this out there, and that people actually take their valuable time to read it, and then convey to me their reactions. And so because of all of that, it has been really important to me that everything I write here remains absolutely authentic to my experience, even if that feels a little uncomfortable at times.

So, what feels so uncomfortable? Well, up until now, I’ve been talking about my cancer in this somewhat generic way. Despite the differences in treatment protocols, really, this experience could be relevant to people with lots of different types of cancer. But today, I’m talking specifically about something I keep pretty hidden, about my breasts themselves, rather than the cancer inside them (ok, it’s just inside the left one, but I’m having both removed, so I’m talking about both here). And it feels uncomfortable to be trying to talk frankly and openly about something that is so sexualized in our society, to an audience that includes people with whom I am generally more guarded. Maybe this indicates some level of prudishness on my part, more than I recognized before. Regardless, I’ve been struggling with this post. So I’ll just talk about my fears as thoroughly and authentically as I can, and hope that I won’t cringe later.

On Monday, (yes, 11/11, checking in at 11) I will have both of my breasts removed. While this may seem obvious, it keeps occurring to me with a start that they will be gone permanently. Not just until treatment is completed, which is sort of what feels like should happen, but forever. These parts of my body that are so personal and private to me, will first be taken to a lab to be coldly and clinically dissected for evidence of disease by someone I don’t know and wouldn’t recognize me on the street, and ultimately just be added to biohazard trash, along with needles, gauze, plastic bits of disposable medical equipment, etc. Someone who I don’t know is going to see and touch my breasts without me there to give permission, and then will throw them away. That feels unreal to me. And more than a little unfair.

And these parts of my body, they mean something to me. I actually like them. They feel more integral to who I am than, say, my elbow or my little toe. I think that’s in part because they are a huge symbol of my personal gender identity. Maybe this feels counterintuitive, since I joke so much about how little attention I put toward valuing my appearance. But for me, it’s maybe because of that fact that they are important. They are the one consistent part of me that make me feel feminine, and I like that. They do this without requiring me to put on make-up, do my hair, or put time and thought into my wardrobe. So they’re like my lazy femininity (which, now that I think of it, is an apt description of my gender identity itself). But the point is, this personal and important part of my body will be gone forever in less than a week, and I’m experiencing that as a profound loss. I hear other women experience this same process somewhat eagerly, like they can’t wait to have their diseased breasts removed. And that makes sense — the surgery is literally lifesaving. But that’s not how I feel. I am definitely grieving.

The other main thing I’m feeling is dread. Dread about a few things, the first of which is my appearance. Let’s face it, I don’t have a boyish figure, so this post-mastectomy look isn’t going to go well. I will have no curves up top, will still have my ever-growing mid-section, and my surgeon just told me that my chest bone protrudes more than that of the average woman, which will be more obvious after surgery. Lovely. People keep asking why I don’t just wear prosthetic breasts if I’m so concerned about how I’ll look. And I get it, easy fix, or so it seems. But for those who know me well, know that I have the tendency to be overly literal, to over-explain things that don’t actually need explanation. When I don’t, it feels like I’m not telling the whole truth. And that’s how prosthetics feel when I think about them. Like I’d need to explain to everyone I come in contact with that they’re not actually my REAL breasts, should the subject come up. Not that I generally (or ever) engage in conversations with just anyone about my breasts, but the feeling is still there for me. It’s also the downside of having been so open about my treatment. Everyone knows that I am having a double mastectomy, so wearing prosthetics feels like an extremely transparent lie. I recognize this as a strange little quirk of mine, and I don’t feel this way about others who choose to wear prosthetics, but I have decided that if it doesn’t feel authentic, I can’t do it. So, I’m left with this impending body shape that our society views as weird, and I’m finding I care about that more than I thought I would. In fact, as I get closer to surgery, I rarely think about it without crying. And I think about it a lot.

Related to that, I also dread seeing people for the first time after surgery. It’s like how I felt about seeing people after going bald, only more pronounced, because it’s forever and way more personal. I’m dreading the first inevitable, furtive glances that people who know me will naturally give me, curiously taking in the difference in my appearance. I’m dreading the urge I will have to scan their faces for signs of pity, and the defensiveness I will feel when I find it there. I’m dreading hugs. Hugs will feel different. Closer maybe? Less soft? Physically uncomfortable and/or painful? All of that plus more I’m not thinking of, and yet I know I’ll want the hugs. Or at least I think I will. I’m a hugger.

I’m scared about how I’ll feel emotionally after surgery. To wake up, and take that first look myself, and have it all hit me. Because while it feels real to me now, I’m aware that I have no idea how it will feel until after surgery. And so all of this, all of these reasons for dread will no longer be hypothetical, but will be my new reality. And it feels like that will likely feel like a sad reality, at least at first while I adjust. I’m scared that the adjustment will take a while; I talked to a lovely woman the other day who spoke openly to me about her mastectomy three years prior, and she still choked up. I don’t want to be sad about this in three years. I want to be happily engaged in my post-cancer and post-grad school life. But life keeps showing me that I don’t always get to pick how things go.

The most recent thing I’m feeling is this unease related to time. Not only are the days until my surgery flying by, but it just occurred to me that, practically, I have less time than others. Three or fours fewer hours. For my family waiting at the hospital, or others waiting elsewhere who are aware of the time that surgery will take place, they have all of those hours until surgery is over. I have until I get anesthesia. Then I wake up without experiencing the interim. And while I of course don’t want to be aware of the act of surgery, I’m feeling a little panicky at the idea of losing those hours. Those are my hours, and I don’t get to experience them. They are being taken from me, just like my breasts are, and I can’t do anything about it.

So this is how I’m anticipating surgery. This unease, this dread, this grief, punctuated by moments of just wanting it to be over, open to the possibility that maybe I’ll feel just fine and will actually like my body more. Until I know that, though, my breath catches more, my attention jumps all over the place, the lump in my throat grows.

As a practical matter, for those who are nervous with and for me, my sister will update my blog on my surgery day, after she hears how it went. Hopefully she won’t abuse this responsibility and share stories or pictures of my painfully awkward teen years, but she’s an older sibling, so who knows.