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happy and proud

I haven’t done this in a long time, and may never do it again. But I just had one of the best weekends of my life, and I find I just want to write about it. So I decided, why not?

Graduation pictures are misleading. They show the graduate looking proud and happy, as if they got themselves through their program alone. And that may well be the story for some graduates. But it’s not quite my story. My story includes a community of family and friends who supported me, helped me, loved me, cheered me on, and stepped up when I needed them.

So my pictures should show my parents worrying over me, and offering me any kind of assistance they could think of. They should show my sister, who is always there for me, and who worked tirelessly over last weekend to make it as special as possible. Or Brian, who, in his quiet way, can always be counted on, no matter what. And Miko, who uncomplainingly put up with a frazzled grad student mom for 7 years. There should be pictures of my friends who came to celebrate this day even though they had brand new babies and were probably unimaginably tired. A picture of my friend Rose, offering her house for me and my family to stay in while we were here, and to throw a party in after the ceremonies. She did so without recognizing her generosity, saying, “but what’s mine is yours, Lauri.” Her picture should also show all the times I cried to her in frustration and all of the judgment she has NEVER given me. Also a picture of Renee driving 8 hours to surprise me, only revealing herself to me as I walked out of the first ceremony. There should be pictures not only of everyone who helped me celebrate, but who knew me before cancer, carried me through cancer, AND celebrated with me. Because trust me, it was incredibly powerful and humbling to look around and see how many of those faces there were (needless to say, these powerful and humbling moments resulted in frequent bouts of tears). And there should be pictures of my family and friends who wanted to come to my graduation ceremonies, but just couldn’t, so sent me sweet, loving messages. They should show the literally (yes, literally) hundreds of hours my professors spent on me to make my thinking more critical, my writing more concise, my skills more polished. Somehow, it seems the pictures should show the systems of privilege that benefit me, because they certainly don’t benefit everyone, and that’s a huge part of the story of my Ph.D.

But the pictures don’t show those things. They show me being happy and proud. I was (am) happy and proud, but it’s more complicated than that. I’m proud largely because I believe it’s an act of rebellion against the patriarchy for a woman to take pride in her achievements. I’m proud of my persistence and my resilience. That even when it got harder than I imagined, I stuck with it.

And. I’m not so arrogant as to think that, for me, any amount of persistence or resilience earned my Ph.D. I am well aware that I am the giddy recipient of a Ph.D. because of how fortunate I am. I wish all of my pictures showed that.

Luckily, one does. It shows my mom ironing my graduation robe, so that I looked my best during commencement. My sister was perceptive enough to take it, and it is my favorite of this whole, wonderful, perfect weekend.

A year ago I was bald.

I’ve been wanting to post again for a while now, but it seemed, I don’t know, self-indulgent or something? I don’t have the need to give anyone health updates anymore, and I really should be doing other things (so yes. I’m currently avoiding school stuff. Shocker). But lately the urge is getting more intense. Something about the time of year, and how different it is than last year, and how the last of my big one-year anniversaries are coming up, or how 4 people I care about have been diagnosed with cancer lately, and it’s breast cancer awareness month, so pink ribbons are everywhere… everything cancer-related is on my mind more than usual lately. Whatever the reason (probably it’s a combination of all the reasons), I have a recurring thought that pops randomly into my head throughout each day:

A year ago I was bald.

That’s a powerful image for me. Because it’s not just my bald head that is conjured up for me, but the feeling that the bald head carried with it. This combination of feeling loved and lonely in the way that only facing your own mortality can make you feel alone. And scared. And tired. And not myself, in a way I couldn’t quite put my finger on. And all the words that describe the type of sick I was — I’ve used them more times than I care to, and don’t really want to again. And grateful for so much.

But that was last year. I’m not that same combination this year. I’m still some of those things, maybe even all of them at different times, especially when I let myself consider what it might be like to relapse. Day to day, though, I’m good. That’s not a big enough word, really, to describe how I am. My life feels full, in a really wonderful way. I feel productive, capable, constantly delighted by my friends and my sweet family, strong, happy. And yes, scared and stressed. A lot. But the scared and stressed are due to problems I yearned for last year. I’m scared about what this next year brings — not in terms of my health, but in terms of the next step in my education and career. That’s a great problem to have, and I’m grateful for the privilege to have that fear. Really, I’m quite a lucky woman.

So. What was the tipping point of writing this post, other than finally giving in to temptation? Well, like I said, all things cancer related have been on my mind lately. And it’s breast cancer awareness month. I guess, I just keep thinking about how lucky I am, and how although I don’t wish I never had cancer, because it brought a lot of really lovely things and people into my life, I never want to put the people I care about through that again. Nor do I want more of my family and friends to be diagnosed. Unfortunately, over 232,000 new cases of invasive breast cancer in women and over 2300 in men are expected to be diagnosed this year. Just this year.

So for breast cancer awareness month, I’m not going to ask you to wear a pink ribbon, or post one on your Facebook page. I’m not even going to ask you to donate money toward breast cancer awareness. I’m certainly not going to ask you to be any part of the donation machine that contributed to the ridiculous and insulting pink drill bits used for fracking. I’m just asking (actually, I’m begging, shamelessly begging) you to check yourself. If you don’t already, make this the month that you start regular self-checks. If you’re a woman of a certain age (I’m looking at you, over 40), make this the month you schedule your mammogram. And yes, they aren’t comfortable. (Okay, they just downright hurt. If I’m being completely honest, the last time I had one, I snapped at the sweet older lady who was my mammogram technician that I was certain that the inventor of the mammogram was a man, and that I’d like to give him a testicular exam using the mammogram machine. She didn’t seem to know how to respond.) But do it anyway. Do it for yourself and your peace of mind. Do it for your family and friends, and to avoid watching them hurt and fear for you. Do it so if there is something there, you can find it early, before it becomes invasive, one of the 234,300. It’s the invasive cancer that, I promise you, you want to avoid.

I’m not bald anymore. My lumpy/dented (that debate was never settled) head is thankfully covered with a full head of hair. I’ve got my life back, plus some. The changing of the seasons, though, takes me right back to last year, when I was just about to finish chemo and lose my breasts forever. It takes me back so quickly to that huge mountain of emotion, always just below the surface. I’m glad it does. Because it reminds me that I’m alive, and to do everything I can to avoid becoming a new statistic again, myself.

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.

refreshed

Every once in a while, a week comes along, and is just what you need. Last week was that week for me.

I had been planning to travel to Washington D.C. to attend and present my research at a national conference. I was feeling ambivalent; on the one hand, I was going to get to see two of my cousins and their families, as well as a dear friend on the way home, all of whom I love and enjoy. And on the other hand, I was feeling overwhelmed with being back in school, was not feeling confident about speaking about my research after such a long break from the academic world, and I was in a lot of pain. My skin was blistering and raw, and it was hard to concentrate. So, I took it in chunks. First, I told myself I would prepare, but could decide not to go at the last minute if I didn’t feel up to it. Then, I decided I would go, but didn’t have to present if I didn’t feel up to it. Then, I decided I would present, but that it wouldn’t be the end of the world if I just bombed the whole presentation. I even warned my advisor about this possibility, as unapologetically as possible.

Turns out, going, and pushing myself (gently) to present, and spending time with my lovely family and friends, was just the thing I needed to rejuvenate myself. My research was well-recieved, and that gave me a bit of a confidence boost to get my act in gear to finish my dissertation. But more than that was the reminder of how much I love the people in my life. The cousins who I saw are sisters, and couldn’t be much more different. What they seem to have in common, though, is this determination to prioritize their families and encourage their kids’ individualities. And it’s working. I saw four very different children, each of who showed love and appreciation for the others, and each of who was unapologetically him or herself. And all of the the parents involved showed love, engagement, concern, and delight in their kids. You can’t ask for much more. Not that I expected to arrive and see a big mess, but I see so much isolation and pain through my studies that it’s always a warm feeling to be around such responsive and supportive families. And of course, they also made me feel loved. The cousin who I stayed with, her husband, and I stayed up late each night, catching up, connecting, and just enjoying each other. Who wouldn’t like that?

Seeing my friend was another love-fest. We are in the same cohort at school, only she is the super driven type who crammed all of her requirements and clinical hours into four years (don’t ask me how, I don’t understand how it’s physically possible), so is on internship in Chicago this year. We talked about our lives, reminisced about school, and waxed nostalgic about how much we love and miss each other. It was pretty sweet.

Finally, coming home to my own sweet family was the capper of the week. Hearing about how their week had gone, catching up on what I had missed, and staying in my pajamas for an entire lazy day after returning made me ready to tackle the rest of the semester in a way that I hope will put me into good shape to finish the program.

And no, it wasn’t all as idyllic as I’ve portrayed. My skin continued to blister and open, making sleep difficult. One of my flights was delayed, and I didn’t have enough time to see many sights in D.C. But presenting with blistering skin ultimately made me feel a little badass, in a way that’s not typical for me. The delayed flight didn’t make me miss much, and not having enough time to see the sights only means I get to go back and see my sweet cousins again.

All in all, a pretty great week.

 

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.

 

my puppy taught me about empathy.

About a week after surgery, I went and saw a cardiologist to address my reduced heart functioning caused by chemotherapy. It didn’t go well. I’ve written about this before, but basically the guy told me I had about twenty years to live with my current heart functioning, less if I went ahead with my cancer treatment as planned. He gave me no ideas on how to help myself heal, derisively questioned my care up to that point, and (perhaps most infuriating at the time), opened my shirt to examine me without warning or permission. Again, this was one week after my double mastectomy, so I was extremely sensitive and protective of my chest. Even had it been before, though, it’s my body, he should ask. Or at least announce.

After writing about my experience, I found out he is actually a friend of a good friend, one who I respect and value. Apparently he’s a very smart guy and does well in his field.  My friend, who is one of the smartest people I know, even called him a genius. Given that information, I started questioning my decision to never return to his office; if he could give me the best care, maybe I should try and stomach his lack of bedside manner. Or any manners, for that matter. But… he’d started out our appointment by saying that he didn’t know anything about my condition, except the one article he had read that morning, so I decided to look for someone with more experience with my specific issue.

Fast forward several weeks, and I found myself with a cardiologist who couldn’t have been more different. She had been suggested to me due to her experience with similar people, both patients and her own family members. She treated me warmly, asked about my life to put me at ease, and reassured me that I could live a long and full life, even if my heart functioning never improved. She talked to me about ways in which I could help myself, which was empowering. She left me feeling hopeful and comforted.

Thing is, when you get down to the nitty gritty of it, she didn’t change the direction of anything he said or the medication he had prescribed, and even agreed that not much is known about what I have. So why was my experience so different? She treated me with empathy. I’ve given a ton of thought to why that made such a difference to me, because it did. Here’s what I’ve come up with: when I was meeting with him, I was immediately put into a defensive mode. While I was trying to listen to him, I was also having an internal dialogue about whether or not I should just leave, if my emotional reaction to him was unreasonable, etc. So I had a harder time hearing what he was saying, or engaging in a conversation with him (not that he let me utter one sentence without interruption, but still). This, by default, made me a passive participant in my own healthcare. It made me feel disempowered. I shut down when I feel disempowered, while I rage internally. He may have the best knowledge his field has to offer, I don’t know. But for me, it was inaccessible, because he didn’t respect me enough to try and empathize, or even show a little compassion. So his knowledge was all but useless to me. She, on the other hand, made it safe to ask questions, share concerns. She made it so my brain didn’t have to engage in a fear-based inner dialogue, and could focus on the information she was trying to share. She made her information accessible to me. She empowered me. I hear her every day when I walk my dog or eat my vegetables or engage in mindfulness meditation. I hear her and am comforted that I am doing all that I can.

Clearly, I’ve been festering about this for a while now, since my appointment with him was in November, and hers was several weeks ago. But it became relevant to me again the other day indirectly, when I needed training for my new puppy. Let me back up a little.  People who provide therapy to kids and their families have a common complaint that parents want to drop off their children with the therapist to “fix them.” To really get at an effective solution, though, parents need to be involved. Otherwise, you’re just sending a child back into a dysfunctional situation. We joke about it, we complain about it, but implied in all of our discussions, as much as we consciously work to be as judgment-free as possible, is, in fact, judgment. Parents should want to be involved in therapy. They should want to do whatever it takes. When we make this judgment, we are experiencing a failure of empathy.

So fast-forward to my need for puppy training. There is this newly adopted puppy in the house, Grover, who is wreaking all kinds of havoc. He apparently has entered adolescence, so his play has changed to include jumping and nipping. When I’m being dramatic, I like to say that he lunges at my jugular with his teeth bared and mouth foaming, but really it’s usually my arms, and he’s never broken the skin. Yet. So, I got to my breaking point, and scheduled a private lesson with a pet trainer. (Who, by the way, was fantastic. If you need one, check out SIT Happens). When we got there, she started her explanation about how dog training is actually about training the owners, and I immediately noticed I was feeling sad and embarrassed. After thinking about my reaction, I realized it was because, if I’m being honest, I wanted her to fix Grover.  I wanted it to be her responsibility. I wanted to go home with a perfectly-behaved dog. What’s more, when I adopted a puppy, I apparently wanted a puppy on my terms. I wanted him to have puppy exuberance, but only when I felt like it. (To be fair, the timing isn’t the problem so much as being used as a chew toy is). I wanted him to be my vision of a puppy, not his own.

But in that moment, I felt for those parents who just want their children to be fixed by the therapists, because I felt the same thing. I recognized the desperation and frustration they must feel. I could feel how at-the-end-of-their-rope they must be to even bring them in. I realized that I hadn’t really understood this before, and that made me sad and embarrassed at my failure of empathy. I have been complaining about how this cardiologist couldn’t show me a little compassion, let alone empathy, when I have been in danger of doing the same thing to my clients myself, without even realizing it.

So now, thanks to Grover, I start a new semester meeting new client families, ready to accept them with empathy. Hopefully, for my client families, I can be the voice that empowers, rather than the one that shuts them down. One that comforts, rather than angers. One that stays with them, because I make the information accessible.

I’m still mad at that cardiologist, though.

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.

Good Riddance, 2013

Well, we’re (obviously) at the end of 2013, and I’m not sad to see it go one bit. I usually have a strict rule against wishing any minute of my life away, but this year won’t be missed. It was memorable, and I learned a lot. I’m not sorry I went through it because of that, but I wouldn’t want to relive it, at all.

Christmas was bittersweet. I loved seeing my family. I loved having them around me, feeling their warmth, knowing we were all taking a little comfort in being with one another at the end of this wearying year. But I missed my brother. I knew his absence would be strongly felt, but I couldn’t get exactly how that would feel until I was in the situation. And while I enjoyed my time at Christmas immensely, I needed his mischevious smile, his constant teasing, punctuated by looks of utter softness and love. Or I wanted them, anyway, and their absence left a hole. I know from experience that the hole will fill with other things, feel less raw, as time goes on. I know that in the future, missing him will mostly feel like reminiscing about the things he brought to the table that I loved so much. I know that next Christmas will be easier. And none of that knowing takes away the present feeling of grief, so I’m just letting myself feel it.

All this grieving, though, it makes me tired. More tired than I already am from the surgery, and the heart problems, and the worry about radiation. Because it’s not just about Mike. It’s about all of the insults this year has brought. All of them, added together. It creates in me this naive expectation that 2014 will be better, as if at midnight, something clicks and my luck changes. I know that’s not how it works, that December 31st and January 1st are actually only separated by a pretty arbitrary date line, but I want so badly to think all of this ends within a matter of hours, and my life drastically improves once the clocks strike midnight. I mean, not just for me. Actually, mainly not for me. Since Miko was six, we have lost five people in our close circle. Five people in five years. I want her to know a year with no death, without the next year making up for it by bringing two deaths. I want to look at my parents and not see the grief and the worry in their eyes. I want all the people I love to just be able to enjoy whatever is occupying them from moment to moment, without the obstacles of mourning or fear.

But I can’t control that. Or much of it, anyway. I can start radiation on the 2nd, and dutifully complete the entire regimen, or as much of it as my body allows, to minimze the chance that they will have to mourn me as well. I can try to be present in my own moments, allowing myself to feel whatever those moments bring me. I can be cognizant that it is important to reach out to my family and friends more often, even if it’s not in my habit, and even when I’m frustrated with them, because I don’t know how much longer any of us has. I can say yes to experiences more often, like my brother did, because who regrets a fuller life? I can be grateful for all the good little (and big) things, even (or maybe especially) when they’re brought because of the bad stuff. I can give my time and energy to only those things, experiences, and people who sustain me, help me grow, or make me feel loved. I can offer love when I see grief in the faces of those I love (or even just like), since I can’t protect them from having to experience it in the first place.

And I can hope. I can hope that the radiation does its job, that 2014 offers my circle a repreive from sickness and death, and that by the end of the year, we’re all a little sad to see it go.

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.