Tag Archives: breast cancer

On to better things

Man, it’s been a year. Not one I’d care to relive, but one that I’m thankful I experienced. I’m so relieved it seems to be wrapping up nicely, from all indications.

I saw my cardiologist recently, after having a follow-up echo to see if my heart functioning had improved at all. I wasn’t too worried, since she had said that I could live a long and normal life regardless of whether or not improvement was shown, but worried enough to want to know. It has normalized. Still not back to where it was, but within in the normal range. And there’s no reason why it won’t continue to improve. So now I can continue to take Tamoxifen, the medication that blocks my estrogen receptors (since my cancer was estrogen-receptor positive, meaning estrogen promoted its growth), have my port removed, and move on with all things unrelated to cancer. That feels pretty damn good.

When I told my mom, she asked if I was going to continue to blog. Right then, it hit me that I think I’m ready to be done. I think I’m ready to return to a life of private thoughts and feelings and events. Besides, at this point, blogging would just be me sharing my reactions/thoughts/feelings to random events, which feels a little self-important, after a year of feeling too-much-in-the-spotlight. I’m not sure why it feels self-important, since I don’t have that reaction to other blogs, and in fact I enjoy reading them. But when I think about continuing, it just doesn’t feel right. Maybe I need to move on from this year? Maybe continuing to blog feels like holding onto something I’d rather move on from? I’m not sure. I’m just going with it, and reserving the right to change my mind at any time.

I probably will update for major events, like if and when I decide to do reconstruction. No, I think I can take the “if” out. I think it’s when I decide to do reconstruction. Right after my mastectomy, I thought that maybe I wouldn’t go that route. I didn’t hate my new body like I thought I would, and something appealed to me about walking the talk about body diversity. Owning my new, interesting look. But the other day it hit me: I don’t love my new body, either. It’s a pain to find clothes for. And I’m not sure I want to be the poster child for body diversity. I mean, let’s be real, it’s not like reconstruction is going to make me 5′ 9″ and a size two. I’m still going to be all scarred up. I will continue to have the world’s shortest torso and a thicker middle than clothing designers think is reasonable. So, I’ll still be supporting the sisterhood, regardless. I won’t be a total sell-out. I’ll just, you know, be able to find a swimsuit and buy a dress off of the rack. Surgery was the easiest step of this process for me, so I think I’ll just go for it. Since I refuse get implants (I don’t need anything else in my body that doesn’t belong there, thankyouverymuch), they will will reconstruct breasts using tissue (read: fat) from my abdomen. I’ve been saving up for just such an occasion! And since I’m unlikely to lose weight while on the Tamoxifen for the next 5-10 years, it appeals to me to just re-shuffle what I’ve got. It’s like a redistribution of wealth, only just within my own body. Quite progressive, if you think of it that way….

I’m not sure if this will happen in a few months or a few years — I have a few important things going on this summer that I’m not willing to budge on (unless life intervenes like it did last year). But I’m pretty sure it will happen, and I’ll let you know if it does.

Until then, though, I’m feeling content living a normal, quiet, cancer-free life, free of the turmoil and drama of last year. With a much greater appreciation for the sweet people around me.

things unexpected

I’ve been forming a blog post in my head for the last several weeks about various unexpected things that I learned from this tussle with cancer, but a few things have stopped me. First, if I write that post how it keeps popping into my head, it feels like an end. And there are still things I think I want to say. Some of them I don’t know how to say yet, and some of them haven’t formed, but I can feel them there, waiting to come out. In any case, I’m not quite ready for the end of blogging yet. Maybe soon, but not yet. And second, I can’t really get past the first two items that would be on my list of things unexpected that I’ve learned, or decide if they are actually  separate. So maybe I’ll just talk about them for now.

Before cancer, whenever anyone went through something difficult, I liked to comment that if I had to go through the same situation, I would melt into a pile of goo, unable to cope. Not because I needed validation from whomever I was talking to, but more because my self-deprecating nature delighted in that vision of myself, quivering in a gelatinous blob. And also, it just felt accurate.

But now, that visual doesn’t feel right. At least, not anymore. Not to describe post-cancer Lauri. And that surprises me. I didn’t expect it. I didn’t expect that I would be able to handle everything that I have. I didn’t expect that the experience of cancer would both be as difficult as it was AND manageable. One or the other, but not both. I didn’t expect that chemo would be hard in the many emotional ways that it was. That the steroids and fear would leave me so agitated and on edge, that I would, on some days, take an anti-nausea pill as much for the emotional escape that sleep gave me as for the nausea. (This topic is another post, because it is a part of cancer treatment that goes undiscussed all too often, but it also needs to be said here, so I can’t avoid it). I also didn’t expect that I would be able to recognize that when it happened, and tell myself, “No more.” And actually successfully follow through with that. I didn’t expect that the hardest part of surgery for me would be the complete reliance on others, and not the pain or the drastic change in my body. I didn’t expect that if the worst-case scenario symptoms of radiation happened to me (which they eventually did), that they wouldn’t really slow me down. And I just didn’t expect, when I got diagnosed, that the experience of cancer and its associated treatments would leave me feeling so much stronger than I ever have. I mean, to be fair, I’ve always defined myself as a wimp, so stronger than that isn’t much…. but I do feel strong now. Very strong. And as a result, very happy.

The other item on my list of things I’ve learned is that although the world can be unrelentingly cruel at times, and it can, it can also provide balance through humanity. I know I’ve blogged about this to the point of sounding like a Pollyanna, but it’s just been my experience, and I can’t talk about my experience without being brought back to the beauty and care that people have surrounded me with. People have been so incredibly selfless and loving. Some of them were expected and reliable and comforting, and others were complete surprises, in a breath-catching way. But more and more I realize that maybe this is the secret to my newfound strength. It isn’t that I can handle anything that the world throws at me (And just to be clear, Universe, I really don’t want to test that out, thanks), but that I’m surrounded by such good people, that I don’t actually have to handle much alone. And the things that I do, the physical things, well, those are made more bearable by knowing I have the support of so many lovely people. Maybe my strength isn’t about me being an island of strength like I always imagined it to be, always admired in other strong people, but about allowing myself to access the strength and help of the people around me, and in keeping that circle filled with loving, reliable people.

And maybe that’s what I want it to be. I really don’t want to walk away from this with an arrogant swagger, feeling prideful in a “keep heaping it on, World, I’ll keep going,” kind of way. That isn’t helpful to anyone else, or to me, really. I want to feel strong in my ability to lean on my people when I need. In respecting my individual limits by my ability to say, “No, I cannot take on another project/client/assessment/whatever-the-job-is,” without feeling like a failure. I want to take pride in the strength of finding balance in my life, giving as much priority to the enjoyment of the people and places around me as I do to the tasks ahead of me. And that’s unexpected for me. I thought that the feeling that came from finding myself capable would be enough. But I’m learning that it’s not. I’m learning that my version of success is embracing my inter-dependence with my circle of people as a path toward true fulfillment. I’m still working on that, but I’m getting there.

Radiation (Or, I don’t have cancer)

I realized I have yet to write about radiation. This feels significant, because it is almost over. I only have one more full treatment. After that, they just radiate my left mastectomy scar five times. Then I’m done. With every other part of my treatment, I write and write about every move, getting my worries, concerns, fears off of my chest. But with radiation? It’s barely gotten a mention.

This is a case of No News is Good News. Basically, if some doctor says to you, “You have cancer, but can pick your treatment (assume they all have the best success rate): chemotherapy, surgery, or radiation,” ALWAYS CHOOSE THE RADIATION. (This will never happen, I’m pretty sure. But just in case it does.)

Here’s what happens, every day:

I go into the office. I don’t even check in, because one of the receptionists says, “Good morning, Lauri! I have you all checked in!” (Okay, so they always pronounce it “Lori,” but whatevs.) Then I sit down for a minute max, until one of the techs comes out, and smiles at me as if I’m the bright spot in his/her day. They take me back to the changing rooms, where I take off my shirt, put on a gown, and head back to the radiation room. Here, I’m given a warmed-up blanket, and lie down on a bench with my head comfortably supported. I hold onto bars above my head, and allow the techs to push and pull me into the exact right position. As they are doing this, they ask me about my new puppy, my classes, if I’ve been hiking that week. They tell me about what they did over the weekend, and maybe we discuss Downton Abbey. It’s all very pleasant and congenial. At some point someone says, “88.4,” and someone else says, “.5 to the left.” I’m not sure why, I’ve never been concerned enough to ask. Then they leave the room, and I suppose the machine over me zaps radiation onto the exact dimensions they have specified, making the skin on the upper left quadrant of my torso, in an exact rectangle, a little darker shade of pink. Then it rotates around and zaps my back. I’m sure that’s pink, too, but I can’t see it. Once that’s over, they come in, and make some readjustments, so they can zap me more superficially, I think to protect my heart, but still get my scar, where the cancer cells can hide. I’m not really sure. Then I’m done, and I unwillingly give up my warm blanket. The whole thing lasts about 15 minutes, including the time it takes to change my clothes.

I keep meaning to look up exactly what is going on, so I can explain it better, but here’s the thing: I don’t really feel a need to. This is huge for me. If I am looking something up in as many sources as possible, that means I’m anxious. Maybe I’m not feeling well, maybe I’m afraid I’ll be feeling horribly soon. Maybe I’m afraid for my life. I research to try and comfort myself, arm myself with as much knowledge as I can. But I’m not this time. I’m blissfully ignorant. I’m skating through radiation with very few worries. And in fact, I’ve had it pretty easy. Some people get such bad burns that they blister. Some people get really raw skin. Some people get really fatigued. In the last week or so, I’ve started to get this weird burn/rash thing that feels like a combination of a sunburn that extends down into my muscle, and an itchy rash that feels like it would hurt to scratch, and has random bouts of a stinging sensation. It hurts a little more every day to lift my left arm above my head, because the tissue underneath the skin is pretty swollen and irritated. I also get tired pretty easily, which is poorly timed with the beginning of the semester. But compared to chemotherapy? Or recovery from surgery? I am fully functional. I am not throwing up. I am not highly emotional, or so tired that walking to the living room is a task. In fact, I go hiking pretty frequently, and even tried snowshoeing recently. I feel better than I have in a year and a half, when I started feeling so tired, when I’m convinced my cancer started to grow.

This feeling was validated by my  medical oncologist last week. I went in to talk to her about the anti-hormone therapy I will be starting in a few weeks. My type of cancer responds to estrogen, so for 5-10 years, I will take a pill that will block my estrogen receptors. This will reduce my chance of recurrence to one that is almost equivalent to that of the general public. I asked her when the  clock started for me to be able to say I’m cured. She said that unfortunately, with my type of breast cancer, I can never really say that. Recurrence can happen 20+ years later. BUT, I can say that for now, I have no cancer. My PET scan in the summer showed that the cancer had not spread beyond the lymph nodes. Since then, I’ve had chemotherapy, which took care of all of the cancer, except for the small bit that was found at surgery — and that’s been removed. So there is no reason, no indication, to say anymore that I have cancer. I had cancer. I do not have cancer anymore.

I don’t have cancer. Now it’s not just a feeling. Now it’s a fact. I think I need to repeat it a few more times to let it sink in.

 

active participation

I feel as if I’ve entered a new phase of my treatment and recovery. I think it’s probably most accurate to say that up until recently, I’ve been mostly a passive participant in my cancer treatment. My medical oncologist told me what chemicals they would be using to fight my disease, and subsequently nurses administered the chemotherapy while I sat there and watched. My surgical oncologist told me that best practice involved surgery, and I went under anesthesia while she removed my disease. My radiation oncologist informed that radiation for 6.5 weeks would dramatically reduce my risk of recurrence, so I go in like a good little soldier every weekday while the techs radiate my left chest wall. After that is done, my medical oncologist will prescribe for me anti-hormone therapy, given in pill form, which will also reduce my risk of recurrence, since my cancer is (was? I’m not quite sure which tense to use anymore) estrogen-receptor positive, meaning estrogen encourages its growth. I will take that for five years, because all three of my oncologists (plus several years of research) have told me to.

But the further I get into treatment, the more active I am becoming in my own recovery. At first, this was scary, because it involved deciding which doctor to believe, since there was disagreement as to whether or not to continue any kind of cancer treatment, due to my compromised heart functioning (more on that in a future post). My reaction to having to decide for myself which way to go, after passively allowing others to care for me for so many months, was a bit on the panicked side. I’m not trained for this! What if I choose wrong! Can’t someone else just tell me what to do?? But after making that first decision (deciding to believe the radiation oncologist who said he could protect my heart, and who was way nicer than the cardiologist who I didn’t like anyway), active participation is WONDERFUL. I feel like I finally have some control over what happens to this life I’ve learned to value. I listen to my doctors’ recommendations about strengthening my heart and further reducing my cancer risk through diet, exercise, and mindfulness meditation, and implement them with gusto, tailoring them to fit who I am and how I live. I do my own research on how to reduce the discomfort of burning during radiation, and add that to what my radiation oncologist says. But most of all, I am rethinking old decisions, rethinking what I should look like in this post-cancer life.

As I wrote about in Anticipating Surgery, I was incredibly nervous, during the weeks and months prior to surgery, about how I would look post-mastectomy. I was nervous that my new appearance might cause me to sink into a depression. I thought about how I could best dress to camoflauge my new shape. I dreaded seeing people I knew. The reality, though, is that I don’t mind my new look at all. In fact, I kind of like it. It’s true, I’m all scarred up (7 in all!) and misshapen. No, let me rephrase that: I’m shaped differently than I was before, and differently from how the typical female body is shaped. I don’t have the smooth, rounded, gender-typical lines that I’m used to. And it’s not pretty. But it’s interesting. My body tells a story now. It reminds me of the strength that I had no idea I possessed before all of this. It shows that my life is different, unique, that I have something to say. And I’m finding, to my surprise, that this is more valuable to me than pretty.

So I’m rethinking reconstruction (and reserve the right to rethink it again. And again). My new form of active participation in my cancer treatment is to rethink old decisions. To recognize that I hated the total dependence that surgery created, and to tell myself that maybe another, more involved surgery isn’t right for me. We talk a lot about embracing body diversity. Do we honestly only mean that we should be accepting of varying heights and weights? More and more, I’m thinking that maybe to really walk the walk of body diversity, I should embrace my differently-shaped body, not camouflaging its difference, but celebrating the strength in the story that it tells.

Uncertainty

It’s interesting. Having cancer isn’t what you think it is. Or anyway, having cancer isn’t what I thought it would be. I had it pictured as this melodramatic Lifetime movie, the big pieces of bad news being the hardest, followed by copious amounts of sobbing. In reality, I’m usually just too numb to really react to the big news. Numb, and mentally diving into whatever solution is being proposed. So those parts haven’t been the hardest parts, not really. The hardest parts are the chronic, low level, gnawing parts, like the month-long irritation across my chest, which isn’t bad enough to medicate, but just makes me grumpy and serves as a reminder that I’m still sick. Or the being tired all of the time, watching wistfully as my friends engage in fun, active activities. Or the waiting. And the uncertainty. You’d think I would be well-practiced at handling uncertainty by now, but I’m still pretty lousy at it. And unfortunately, things just seem to be getting more uncertain, not less.

In Two steps forward, one step back,  I talked about the damage done to my heart by both my chemotherapy, and the antibody I was taking, the one that made treatment so promising. But I was pretty hopeful, because this damage wasn’t all that uncommon, and in most cases the heart regains its functioning within a month or two. So we were waiting another month to have another echocardiogram, to make sure my heart function had bounced back before we resumed treatment. Only mine didn’t. From what I understand, a healthy heart ejects between 55 and 70ish % of its blood with every beat. Before and during all but the end of my treatment, mine ejected about 65%. Now, it ejects about 42%, and isn’t improving. According to my oncologist, that means the the treatment is just too risky for me to try again.

The good news is that we don’t really know how much of this treatment (Herceptin) is enough. It’s possible what I’ve had is sufficient. And I still can get my radiation therapy and hormone therapy. Also, it’s possible I’m cancer-free, right? So maybe I don’t even need it.

But maybe I do, and that is what is wearing me down. That nagging voice, which is saying, “You aren’t getting the first-line treatment anymore. That could matter.” Or, “You might have a damaged heart forever.” That, and how it complicates other parts of my treatment. My left ventricle, the part of my heart that is damaged, is in the way of my targeted radiation treatment. Doing conventional radiation could further damage my heart. So my radiation oncologist wants to do a more specialized form of radiation called IMRT, in which he sends the beam around my heart. Of course, he anticipated a battle with the insurance company, which delayed my treatment. Luckily, my nurse case manager got on the case (have I said lately how much I love nurses?), and made the approval happen in record time. But still, just the ups and downs and uncertainty of the whole process left me feeling drained, and at the mercy of other forces. Out of control. I don’t do well with Out of Control.

Fortunately for me, this emotional rut comes at the best time. I’m not a particularly religious person, but I do find Christmas to be as close to religion as I normally get. The act of everyone coming together, regardless of the hassle, just to be with one another and walk through our traditions, makes me feel a part of something bigger. My family makes a three-day extravaganza out of it, and there are a few moments every year that define Christmas for me. The first comes while driving on Christmas Eve to wherever I’m sleeping. Hopefully it’s foggy, certainly it’s dark, and there’s always something mystical about the chilly air. I feel bathed in happy anticipation, content to be spending time with as much of my family as could make the trip. The second comes on Christmas Day, while we’re opening presents. Say what you want about the dangers of consumerism (and I’ll usually join you), but there is something about everyone giving to everyone else that I love. Every year, there is at least one gift that takes the collective family’s breath away. In our family, it isn’t because it is the flashiest gift, or the most expensive one, but because it makes the receiver feel known.  That moment, when I’m watching someone open up a gift, and I can just see that look on his or her face that says, “Oh. They get me.” is such a powerful moment for me, and always chokes me up. Because what is a better feeling than feeling truly known? One year it happened when my sweet nephew made his dad, my brother Mike, a stuffed fish with a red mustache. Anyone who knew Mike will understand why this was perfect (ok, he was a fish broker, was known for his signature pushbroom mustache, and was one in a family of redheads). Another year it happened when my sister gave her mother-in-law, Linda, a picture of her son, my sister’s husband. This was so poignant because just a few months earlier, Linda had suddenly and tragically lost her other son. There isn’t anything that Linda loves more than her boys, and so there wasn’t a dry eye in the house. The last moment comes usually on the 26th or so, when we have our annual Christmas party for the extended family (or as I like to call it, Cousin Day!!!!) and I look around, appreciate all the familiarity, take in the changes the year has made, and bask in cousin love. This year Cousin Day will be made even more special, because my friends, Renee and Luke, are brave enough to join us.

All three of these moments will be different this year, because none will include my brother Mike, except in memory. We will all be so aware of this, because Mike was such a large presence at Christmas. But we will have each other, and we will all have our own moments, which I am certain we will cling to more tightly due to the hardness of this year. And these moments, they will give me the comfort I need to face the continued uncertainty that awaits me.

Thankful

I wanted to write something about how thankful I am for all of the loveliness in my life. I’m hesitating, though, because of the timing. I mean, on the one hand, it’s perfect timing, right? Thanksgiving weekend? And on the other hand, it feels sort of… unoriginal maybe? By this time in the season, we’ve all read what each other is grateful for on Facebook or other media, around the dinner table, etc. While I believe in the power of gratitude, and do believe that we could all stand to be a little more mindful of what is good in our lives, at some point one thing does start to bleed into another, and I fear it starts to lose its meaning, or something. I recognize gratitude fatigue shouldn’t be a thing. I’m just explaining my hesitancy, I guess.

However, regardless of my ambivalence, the fact remains that I have been enormously blessed this year, and feel the need to recognize it. Because whenever anyone says something about losing their faith in humanity, I wish they could see life from my viewpoint. And maybe I feel the need to balance what I see on the news. Because from where I stand, the humanity that surrounds me couldn’t be much better, and I am so thankful for that.

My mom had this experience as she was staying with me after surgery, in which she got into a conversation with a stranger (this part is by no means unusual for my very social mother). The man also had a daughter who had just had a mastectomy, but the similarities ended there. The woman had nobody to care for her except her father, who was stuck at work. She was waiting in the hospital for him to get off of work and take her to his apartment, which wasn’t big enough for the both of them. He was very nervous about how he would give her the post-surgical care that she needed. I’m not even sure if she had insurance.

Contrast that with my experience. I not only am fully covered by health insurance, but I was able to travel to a different state to have the exact surgeon I wanted. I am so incredibly thankful for that, and so acutely aware that I could have just as easily been in her position as I am in mine. During surgery, I had my parents, Brian, and Miko anxiously waiting for me in the hospital, and countless others in other places. After surgery, I was thoroughly spoiled and cared for by family. First, my mom came with us back to Missoula to do everything I needed and every chore I couldn’t attend to, making me feel as if there was nothing she would rather do than make my meals and drain my surgical drains. She made me delicious smoothies, took Miko to and from school, and washed and ironed everything she could find in our house, most of which I didn’t even know needed to be ironed.  The day after she left,  my sister took her place, and took care of my every need and want. Again, delicious meals were made and chores were done. She stayed a week, buying our groceries, running our errands, entertaining us, and making me feel like the most loved sister in the history of sisters. And what’s more, had my mother and sister not been able to come, I can count at least 10 people who might have helped had I called. While they were here, I actually had to turn away help. I was overwhelmed by the goodness of people.

During this whole process, people — and I’m not just talking my immediate circle here — really could not have been nicer or more generous. I’m consistenly reminded of the love around me. All of the cards and the gifts and the flowers and the meals and the messages of hope and love, they have helped me more than I think I am even aware. Because they let me know that while this may be happening to me, I am not alone. That is an incredibly powerful message, one for which I am so thankful (despite being painfully late on my thank you notes).

It’s not only the people in my life I’m thankful for. My sweet dog, Rufus, stayed by my side all summer, while I was at my sickest. When I got home from surgery, he didn’t let me out of his sight if he could help it. Unfortunately, it wasn’t until a week and a half after surgery when his breathing became labored that we found out that he had been struggling with his own cancer. While we were putting him to sleep, I was overcome with gratitude that this loyal companion gave me constant comfort at a time when he just needed a little comfort himself. I am so thankful to have been the human to that loyal dog.

So when I am discouraged by the news, by accounts of people trampling others on Black Friday, gun violence, abuse and neglect, I remind myself that this isn’t what I see on a daily basis. And maybe it’s true that the people around me are just especially good (because I do have outstanding people in my life), I like to think what I see every day is a more accurate reflection of humanity. These well-wishes I receive, this need that others have to let me know that I am in their thoughts and prayers, these consistent offers of help and food and sweetness, they aren’t sensational or sexy enough to make the headlines that scare us. But they happen every single day, and serve as a reminder that people can be pretty wonderful. So I am so thankful for all of those reminders. And honestly, I wouldn’t be nearly as aware of this wonderful humanity were it not for my cancer. So, in a strange way, I’m thankful for my cancer as well. As long as I can beat it.

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.

Two steps forward, one step back

It feels like I keep taking two steps forward, and one step back. I mean, maybe it’s one step forward, two steps back, but I like the first one better, because it’s less discouraging. So let’s call it that.

I found out this week that I have to discontinue one of my treatments, at least for a month. I described in my last post, Done., that although I’m done with chemo, I still am scheduled until July to take an antibody called Herceptin, which specifically targets the cells that create this overexpression of a certain protein that makes my cancer so aggressive. The great thing about this drug is that is has shown to be wildly effective in successfully beating the type of breast cancer that I have. So while it was scary to find out orignially that I have aggressive cancer, I felt lucky that it was this specific type (HER-2 positive), because that made it more treatable than others.

The bad thing about this drug is that in some people, it causes damage to the heart. This is what happened with me. A few weeks ago, I started feeling that I was becoming winded just too quickly, and sometimes felt some chest pressure. My doctor wanted me to go to the ER, and see if I had a blood clot in my lungs, so I did. They did a chest CT, and found nothing of concern, really. Well, maybe a suggestion of a little something, but since I was scheduled to have an echocardiogram the following week, my doctor just ordered some extra views to play it safe, but nothing to worry about. (At this news, I said, “Oh, great, so basically I just went to the ER to be told I’ve become fat and out-of-shape?? Super.”) Turns out, though, there is a decline in my heart functioning. Specifically, my left ventricle isn’t pumping like it should.

There are a few possibilities here (that I know of). The first is that because I had that really awful chemotherapy (Adriamycin) at the beginning of the process, the one that made me so sick, followed by the Herceptin (both of which are associated with damage to the heart muscle), then my heart is permanently damaged, and I will have to discontinue the Herceptin for good. The other is that, as sometimes happens, the cells in my heart are something my doctor called “stunned,” and just need a break from Herceptin, hopefully just a month. I like the second one better, because it allows me to continue with the standard treatment, associated with the most positive outcomes. So for now, I no longer take trips into the infusion room to get my dose of Herceptin. Instead, I take two blood pressure medications (even though I have very low blood pressure), in order to protect my heart. In a month, I will do a repeat echocardiogram, to see if it worked. Of course, this will be exactly one week after surgery, and will require me to lie on the side on which I am having my lymph nodes dissected (located at my left armpit), so I’m not super excited about that day, but I’ll gut through it, if it’s at all possible. I guess the other thing is that my surgeon is out of town, so she hasn’t weighed in on whether I can still have surgery as scheduled. I’m trying not to contemplate that possibility too much, because the consequences of leaving any residual cancer in there, untreated, sounds too scary right now. Plus, my medical oncologist (Dr. Scott) feels pretty confident that my surgeon won’t change the date.

So, should my heart not recover like Dr. Scott is predicting, I have to stop the Herceptin for good. Like I said before, this is scary to consider because instead of having the aggressive-yet-more-responsive-to-treatment type of cancer, I’m just left with… aggressive. However, we don’t actually know how little of this stuff you can get away with, and still have the same positive effects. In fact, there is a small Finnish study that indicates that getting nine weeks of Herceptin is as effective as a full year. Of course it’s a small study, and it’s just one study, but I’ve had 13 weeks of the stuff, so I’m trying to find hope in that.

I can’t help but be reminded that I have been talking a lot about how happy and proud I was that I got through all of my chemo without having to stop. Kinda feels like the Universe is telling me to Calm the Hell Down, not get too cocky. If that’s how we’re playing this, Universe, I would like to publicly retract all conversations I’ve had recently in which I’ve expressed surprise at what a quick healer I am, and how I’ve found all of my surgical procedures to be less painful and uncomfortable than I anticipated. I’ve ended all of these conversations with a (perhaps foolish) prediction/hope that my double mastectomy might not be as bad as I’m anticipating. In preparation for this huge surgery in a week and a half, I would like the Universe to hear that I recognize it could be very, very difficult.

For my part in this, I will work out my heart muscle every day, regardless of how tired I feel (I mean, until surgery). And hope. Hope that in about a month, that repeat echo shows that my heart has regained it’s original level of functioning, allowing me to restart my Herceptin treatments, and therefore be more confident that I am marching toward a cure.