Tag Archives: cancer

One Year

It’s been one year today. One year since my wonderful brother lost his battle with melanoma. One year since he passed away. One year gone, and I still haven’t found the answer that feels right when people ask me how many siblings I have; saying two feels wrong, disloyal. But saying three isn’t quite right, either. So I usually just overexplain the situation in my typical way, making what was meant to be an innocuous question into an awkward interchange.

It feels impossible that a year has already passed since he has been a living, breathing member of our world. And at the same time, it seems impossible that it hasn’t been five years, or a lifetime since last March, since Before my Cancer. For me, today doesn’t just mark the anniversary of my brother’s death, but also the beginning of other unwelcome anniversaries. Tomorrow will be the one year anniversary of when I found my lump. This is followed shortly by the anniversaries of going to my brother’s service, seeing the doctor, having biopsy after biopsy, starting chemo, and on and on. This is significant to me because last year on all of those occasions, I would think to myself, “but my brother just died.” As if I should be spared something bad because something worse already happened. And on all of those occasions, I could also say, “last year at this time, my brother was alive.” But after today, I can’t say that anymore, and that is hitting me so hard. Because the further away I get from his death, the greater the likelihood is that the memories of him become blurrier, less refined. That I’ll have to find pictures of him to really recall the crinkles around his eyes from all of his smiling, giving him this friendly, jokey look. Or I’ll have to listen to old voicemails to fully capture the quality of his loving voice in my head, wishing I also had sarcastic, smart-ass voicemails so I could have a record of how he sounded when he was teasing me. I love remembering his teasing.

I want to say it’s unfair. It’s unfair I didn’t get to connect with him about our diagnoses, and we didn’t get to help each other through the emotional parts, although I’m not sure he ever would have been open to receiving my help, just offering his. It’s unfair he didn’t get to see our sister finally get her dream job, or our brother be happier than he’s been in I’m not sure how long. It’s unfair he won’t watch me graduate (although at my current rate of progress, it’s possible nobody will be able to watch that). It’s unfair he wasn’t able to become a grandfather, because he would have been the best kind – involved, active, and loving. It’s unfair he couldn’t watch his children grow ever more gracious and interesting each day, and his former wife (and dear friend, although that word doesn’t fully capture the depth of their relationship) lovingly and patiently walk them through their grief, as well as her own (I do get that if he had been here, there wouldn’t have been the grief to walk through, but that’s not the point). It’s unfair he and my parents were robbed of more time together to connect and to love. It’s unfair they had to watch one of their children die. 

There are countless ways that this feels unfair. But calling it unfair doesn’t feel quite right, either. Because is that saying that it would be more fair if somebody else’s brother, father, son, friend had died? Would it be more fair if he had lived, but with a poor quality of life? It’s not like we are all promised a long and healthy life, and his promise was broken. We aren’t. We are only given this moment, and for the most part (institutional inequalities and other injustices aside), it is up to us to make sure this moment is lived intentionally, whatever that means to each of us. My brother was good at that. He used to like to tell me that he worked hard and played hard, and he did. He also used to say that I didn’t play hard, often enough. In his honor, it feels like I should do something he would either consider working or playing hard. Something that represents truly living. But I don’t really feel like it today. Today, I feel like holing up, and just being with my memories of him.

My poor, dying skin

So, I might’ve spoken too soon about how easy radiation is. I mean, no question it’s easier than chemotherapy, but it isn’t quite the breeze I depicted it to be in my last post.

Here’s what’s happening all of a sudden: my skin is dying. I’m not being dramatic here. It’s literally dying. I asked my radiation oncologist why I was getting these gray/blue bruises all over, and he told me that those weren’t bruises, but patches of dead tissue. So. Damn. Disgusting.

Only it doesn’t end there. In the areas that aren’t dying, I have these angry, red welts that can literally bring me to tears in a split second, and look like something gross and communicable. In fact, the nurse has started to apply an antibiotic ointment to them, since the skin is starting to open in places. There are even a few on my neck, which is lovely, since next week I head to Washington D.C. to present my research at a national conference, hoping that everyone isn’t focusing on my diseased-looking skin. And I can’t shower too often, either (you’re welcome, Missoula!), because it hurts too badly, even if the water isn’t hot. Add that to the growing list of reasons why cancer treatment is super gross.

And yes, it’s true that I only have two treatments left. I am trying to take comfort in that, but really, when people try to remind me of that fact, I just keep thinking, “Seriously? They’re going to burn my fried, dying skin two more times? That’s not comforting! That’s torture.” Okay, that was a little dramatic. It isn’t water-boarding-level torture, but it does feel at least mildly mean.

This morning, as I walked into the radiation office, an older man who I see every day commented that today was the first day I didn’t come in smiling. Without a word, I pulled aside my shirt, just enough to show him my skin. He replied by showing me an identical patch. We both nodded silently, taking a little comfort in the shared misery.

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.

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.

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.

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.

A political one.

I do this thing every week, as my date with chemo inches closer, in which I start to dread and bargain. I haven’t had enough “good” days, there are too many other ways I want to spend my time, I hate how the steroids make me angry and weepy, I’m tired of the nurses poking and prodding at me, I don’t want to know how the cumulative effects of the chemo are going to make me feel, I want to just skip a week and take a break, or just be done. And then I check myself. Quickly, in case The Universe is listening. And I make sure and sit for a moment in gratitude. Because I’m one of the lucky ones. I’m the one who has the privilege of whining about the side effects that she is experiencing due to her life-saving medications. And the one who is lucky enough to be burdened by all of the medications I take to counter the side effects. I am the one who looks at the Explanation of Benefits (EOB) that my insurance company sends me weekly and experiences curiosity rather than panic. Hell, I get EOBs. I have some bills, sure, because of my deductible, but even that was pretty low, relatively speaking. So I don’t have to make decisions about which treatment, if any, I can accept. Or which bill to pay and which bill not to pay in order to make this work. I don’t have to accept treatment, knowing I will never be able to pay the exhorbitant amount that is charged for it, and make my peace with bankrupcy. I don’t even have to accept a provider that I haven’t thoroughly researched and decided was right for me, because my plan will only allow me a few choices. I really have the best of all worlds.

But I’m constantly aware of how tenuous this luck is. I do this math in my head, this constant recalculation: “If I had to stop treatment now, would I be ok? 6.5 weeks until surgery…. if I keep my benefits through that, I have a better chance of a cure. If I can just keep them through radiation, my rate gets even better. If I can sustain them through the suggested hormone therapy for five years, that’s the best.” And it’s not like I’m in imminent danger of losing my benefits, but, you know, things happen. Every day. Every day, people lose their benefits due to job loss, divorce, death of a spouse, reduction in hours, etc. And I’m acutely aware that although I’m one of the lucky ones now, my luck could run out. I could become these people, who are losing their house because of the cost of treatment over the years. I could become one of the millions of uninsured. I am under no delusions that I have good insurance because I’m more deserving, or work harder or more than others. I just happen to be a part of a family that also includes a family member who is employed by a company that values the health of their employees. And so, because I’m lucky, I have access to healthcare that others don’t. And that makes me angry.

Why, in this wealthy nation, is there such disparity in something so basic as health care? Why should I have a realistic hope at having my cancer cured, but someone down the street with just a little different luck (ok, a lot different luck) should not? More to the point, why are some of our elected officials, who enjoy premium health benefits at our expense, working so damn hard to make sure the disparity continues? 42 times. 42 attempts at repealing Obamacare. 42 times they could have been improving Obamacare, or our education system, or our military, or our gun laws, or poverty, or, or, or, or. Instead, the party of the self-proclaimed fiscal conservative decided to spend an ungodly amount of money on 42 attempts that their own members say won’t be successful. So what’s the big problem? It doesn’t do enough? Agreed. It was the compromise. Too expensive? Well, A) if you’re so concerned about money (you being the elected officials I’m railing against here), stop wasting money by trying to repeal Obamacare just to prove you can stomp your proverbial foot louder than the person across the aisle, and B) do you think our current system is free? Who do you think pays the bills of the people who get emergency care, but can’t afford it? The people who could’ve maybe avoided the costly care they’re currently getting with a little preventative care? Who do you think is paying for that? We are. Think people should earn what they get? That’s a lot easier to do if you’re healthy, and it’s a lot easier to be healthy if you have access to healthcare. Makes government too intrusive in our lives? Because that value doesn’t seem to be a priority when the subject is women’s health or marriage equality. Think our healthcare system needs an overhaul? Me too. But in the meantime, people are getting sick, and being denied care due to pre-existing conditions. I very nearly was. Had I gone to the doctor to check out my lump two days earlier, when I was in between insurance companies (because what could go wrong? I’ll just chance it for a few months, since I can’t afford COBRA…), I would have had a pre-existing condition once my coverage started, and been vulnerable to my care being denied. With no means of paying the considerable sum it costs to access healthcare in the US. So back to Why Not Obamacare (and yes, I’m using their term on purpose)… is it just because this is a continuation of Mitch McConnell’s proclamation in 2010 that the GOP’s biggest priority should be to ensure Obama was a one-term president, setting forth an agenda of obstruction? Is it just because this is Obama’s thing, and if it works, then history might smile upon him? Because that’s not good enough. We deserve more. We pay our elected officials for more. And if they can’t do better, if they can’t improve upon an idea, we at least deserve debate. Good, honest, well-intentioned debate that isn’t funded by the Koch brothers and isn’t filled with misinformation intended to scare us rather than inform us.

So I’m aware this is a scattered post filled with more emotion than with articulate, fully-reasoned arguments, but that’s kinda how I am right now. I could, and probably should, flesh out all of these arguments and provide links to cite my sources. But I’m going to cheat instead. Because I’m tired (playing the cancer card, yes), and because so many others have said it so much better than I can. Most recently (but certainly not confined to her), Krystal Ball sent out a plea to the moderate conservatives, the ones who aren’t falling for the deceit and the greed, to stand up to their elected officials. If you haven’t seen it, click here, it’s worth a watch. Others have debunked the various lies that have been spread as scare tactics, and others have just tried to appeal to our better natures. All of them are readily available everywhere you look (ok, probably not so much on Fox), and all of them are more articulate than myself. Which perhaps makes this post a waste of cyberspace, if I’m not saying anything new. Because I’m not. But I am saying that I am so grateful to have the luxury of dreading my healthcare, and am incensed that to others, my bald head represents an unattainable wish rather than just a side effect.

Confessions of my ridiculousness

I’m sure we all have our own ways in which we are ridiculous. Maybe not — maybe it’s just me. In any case, there are a few ways in which my own ridiculousness keeps popping up lately, over and over, mostly in the form of problems that have solutions for normal people, but not solutions I am likely to utilize. (If you look at it this way, some might see fit to substitute ‘ridiculousness’ for ‘laziness’ here.) Since I have some extra time and nothing else to write about, I thought I’d share them. I’m considering it somewhat of a public service, because this should make you all feel a little better about yourselves, a little more well-adjusted in comparison.

I often get the comment that I’m brave for showing my bald head publicly. My reaction to this is generally surprise or confusion. Does said person not really know me? Is s/he under some misguided belief that I have the patience or interest in keeping up my appearance? (and if so, does s/he pity me that this is the best I can come up with??) The truth is, I don’t bare my bald head because I’m brave. It’s not like I’m scared to go bald, but do it anyway to make a statement for cancer patients everywhere. A more accurate description would be that I am some combination of lazy and comfort-driven. I mean, come on! It’s summer! I’m hot all the time. And I hate feeling hot; I am from Seattle, where mild temperatures reign. So there is very little chance I am going to add to that misery by donning a wig. Maybe a hat. Every once in a while a scarf if I’m feeling fancy or motivated, but I don’t really have the skill or the patience to pull that off like a normal person would. Also, I often forget to look in the mirror, so I’m usually blithely unaware of how I might look to others. Don’t get me wrong, I’m terribly flattered that anyone might find me brave. I’m just saying, that’s not what’s motivating me. Comfort motivates me. Laziness guides me. The one exception? Miko’s first day of school. Apparently that’s where I draw the line of apathy for my appearance. I made a special shopping trip (a rare and dreaded activity in my world) to buy a new hat to wear at drop-offs and pick-ups. By the second day I dropped her off while bald. Hats make me sweaty. Also, I forgot to look in the mirror.

Instead of sticking a needle in my arm every time I need to have blood drawn or get chemo, the nurses access my port. This is a nifty little device that sits just under my skin below my clavicle on my right side, and is used for infusions. It used to look like a round bump, but now that the swelling has gone down, you can actually see the edges and prongs of the port, and it’s pretty disturbing. It’s clearly not supposed to be there, and the more I look at it, the more anxious I get about it (which, in turn, causes me to look at it more, like the car crash phenomenon). The more the port protrudes, the more certain I am that if I lie on my right side, it might just pop out of my skin. The nurses assure me (every week) that this can’t and won’t happen, but just looking at how pronounced it’s become, I’m not always certain I believe them. So what do I do to ease my anxiety? Sleep on my back? Or my left side? No. I continue to sleep on my right side, because it’s more comfortable, and somehow, changing my sleep position feels like too much work. The bonus to this is that every morning I get to wake up and feel pleasantly surprised that my port did not, in fact, pop out of my skin.

My double mastectomy is coming up (in two months). I’m increasingly focused on how I’ll look afterward. I’m self-aware enough to know I won’t do anything about it, so it’s not like I’m planning accomodations or anything. I’m just recognizing that in two months, my already-present body issues will become more pronounced. Essentially, I spend my time actually planning to feel self-conscious, rather than planning ways to make myself feel better. Ridiculous. See, I don’t have a boyish figure. So, this no-breast look is going to look absurd. It just is. Combined with my bald head, and the fact that I gain weight predominately in my stomach, I’m certain I will look like a pot-bellied, middle-aged man come November 11th. I tell this to friends, who laugh nervously (while conspicuously not making eye contact) and tell me that I couldn’t possibly look like a pot-bellied, middle-aged man. But I’m skeptical of their honesty. I’m reminded of a close friend who told me that once I lose my eyebrows, I should draw them back on in outlandish and/or pronounced ways, and see which friends allow me to leave the house that way. Are the same friends who say I won’t look like a pot-bellied, middle-aged man the very ones who would allow me to be seen in public with drawn-on super surprised eyebrows? If I were brave, I’d do an experiment. But I’m not. And just so we’re clear, yes, I’m aware there are several “fixes” to this man-looking problem (wig, prosthetic breasts, new clothes, etc.) But let me just refer you back to my apparently stable personality traits of laziness and apathy, and remind you that those fixes are highly unlikely to ever occur for this girl. That just sounds like too much trouble.

A part of me (okay, most of me) is mad I haven’t gotten cancer-skinny, like you see in the movies. I’m aware of how insensitive this sounds, especially for those who have struggled to keep weight on while their disease ate away at their bodies. But I was just kind of hoping, you know, a silver lining might be that I finally lose some of this weight that I have sort of tried to lose every once in a while, on and off, when I didn’t feel like a snack. Instead, I’ve gained weight. Every week when I see my doctor and complain about it, she is a little less patient with my concern, and reminds me that she is doing every thing she can to ensure that I actually don’t lose weight while I’m on chemo. I thought she could throw a sister a bone or something, but apparently not. So my clothes don’t fit, but I refuse to buy new ones, since my shape is about to drastically change, anyway. The other reason I can’t lose weight (aside from my affinity for ice cream)? If I want the option of reconstruction without implants, I have to maintain a certain level of belly fat. The surgeon will “harvest” the fat from my abdomen to construct my new breasts. (I’m not going to lie, I’m sort of in love with this fact.) Which, makes me sound like a farm or something, and brings to mind the saying “you reap what you sow.” I’m sowing plenty. Hopefully that works out, and I end this ordeal with a rockin’ new bod.

As I read this, I’m aware my mother will probably see it and worry that I need some affirmations, maybe a reframe or two to tell me I’m not ridiculous, but just right. Don’t worry, Mom; I’m ok. Although, a little Mama-love is always welcome.

41

For months, I’ve been saying how much I hate 2013. It’s just been one thing after another, and as much as I don’t wish my life away as a general rule, I’ve been waiting for 2014.

Then it hit me: the crap didn’t start in January. It started about when I turned 40. When I was about to turn 40, everyone was asking me how I was going to celebrate this big milestone. To which I’d answer, “I’m studying for comps.” In my program, after we defend our Master’s, we have to take these comprehensive exams so we can be continued on to pursue our doctorates. They last two eight-hour days, and can be on basically anything we’ve learned in grad school. They suck the life out of you. I took mine exactly one week after I turned 40. Thing is, you don’t just bounce back from taking comps. It takes a good while. I used to say I wasn’t the same the whole rest of that semester, didn’t have the energy to focus on anything else. In retrospect, though, since my cancer was advanced by the time I was diagnosed, it’s possible my low energy was due to the cancer…. sorry to anyone who hadn’t yet taken them, who I might’ve scared. Oops.

After taking comps, a favorite great aunt died, my brother was told he was dying, he died, I got diagnosed, the cancer was worse than originally thought, I had surgery and chemo. Like I said. One thing after another. I’ve been stressed, overwhelmed, heartsick, physically sick, scared, grieving, numb, angry, you name it. So, being 40 started with comps and ended with chemo. Yuck.

And yet. It’s not quite fair to describe my year that way. It’s not the whole truth. Because through each and every one of those things, I’ve been loved. When my cohort took comps, our classmates brought a ton of wonderful food and encouragement to see us through. Seriously, it included a souffle. When we found out about my brother, I was at my parent’s house with a friend who had never met my family before. She sat with us in our grief, and both said and didn’t say all the right things, making us feel safe and loved, even though she had just had a day-long interview for internship. When my brother died, the celebration of his life was not only well-attended, but stories were shared about him that still make me tear up. And as usual, my cousins surrounded us with all the love we could take. When I was diagnosed, my classmates gave me love, even the self-professed non-huggers. The professors cried with me. Really, more than one. Both classmates and professors have brought me food while I’ve been sick from chemo. How many grad students can say they’ve been supported by the people in their program so lovingly? My family, both immediate and extended, has been steadfast in their show of support, doing everything they can think of and anything that was (is) asked of them. I’ve gotten gifts in the mail from friends I haven’t seen in years, hats made for me to protect my bald head, and more loving messages than I can even count. And 40 didn’t actually end with chemo, if I’m going to be precise. It ended with a wonderful visit from my sister and brother-in-law to celebrate my birthday. What could be better than that? Really, considering the circumstances, I couldn’t ask for more. So while it’s true that I’ve felt stress, illness, grief, fear, all those things, it’s also true that I’ve also felt all this love. This love that pervades every single day, and that I would not have experienced or really even known about had it not been for all of the pain.

I was more than happy to say goodbye to 40 this last weekend, and have decided that 41 will be markedly different. But I am also feeling fortunate to have had this last year. It was hard as Hell, sure. AND there was also so much sweetness. But more importantly, I think it taught me something more important than tallying up the good vs. the bad. Something like, it was mine. I got to feel all of those things. I got to experience them. I got to learn how to face my pain. It wasn’t a year to drift through mindlessly, but one that wakes a person up. It made me grateful for all of my experiences, and recognize that my life is richer for having had each and every one of them.

Bring it on, 41.

best-laid plans

It seems as if I’m destined to be presented with the same lesson over and over again until it finally sinks in. Thing is, I keep thinking that it has sunk in, and then, time and time again, am reminded that I have not, in fact, learned the lesson at all.

The lesson has to do with making plans. And control. Every time I think I have a portion of my life planned out, or under control, Life comes along and shows me it has other plans. And every time I meet the destruction of my careful plans with feelings of injustice, as if nothing should change once I decide on a course. Even though it virtually always does.

The first time I remember talking about having learned this lesson (although I clearly hadn’t) was at my grad school interview. More than one person asked me what I saw myself doing in five years. Having had my life take some big changes prior to the interview, I gave what I thought was a wise but truthful answer. I said that five years ago, I had no idea I would even go back to finish my Bachelor’s degree, much less apply to a doctoral program. Moreover, five years prior I didn’t even know what school psychology was. So rather than say with any confidence what I’d be doing in five years, I was open to wherever life took me. Then I think I completely contradicted myself and said something else about what I wanted to do with my school psychology degree. Of course, the contradiction is what betrayed the idea that I had learned my lesson. It also showed my complete ignorance at how long school would take me, but that’s a whole other story.

So last week, my oncologist told me I should start thinking about scheduling my double mastectomy. I glibly told her that I had plenty of time, because I had planned to go to school during Fall Semester, and have the surgery during Winter Break. I had planned it, see? It fit perfectly into my little timeline that nicely worked my treatment around my school, so that nothing was disrupted. I had already extended my schooling for a year, and I wasn’t about to extend it any further. Well. My doctor’s eyes got wide, and I’m pretty sure I detected some panic in her already normally-anxious voice. She might have even twitched. She informed me that my plan wasn’t optimal care for an aggressive cancer such as mine. She said it was ultimately up to me, but letting that cancer sit, untreated, for an extra month, was risky. It was one of those reminders that I don’t go to see her as some sort of alternative summer routine, but rather because I actually have cancer. Oh yeah.

So, my plans changed. I won’t attend school this semester. This is a hard change for me. Another reminder that things are not in my control. But maybe the lesson is that, to an extent, control is an illusion. We can optimize our opportunities to the best of our abilities to have the life we want by making our plans, sure. But maybe the danger isn’t in making the plans so much as it is in the clinging to the plans. When we (or I, anyway) become so attached to the planned timelines we have created in our heads (how many times have I charted out when I would take which class, when I would write my dissertation, when I would apply for internship, when I would be DONE), we feel almost heartbroken, betrayed, angry, hurt, when those timelines have to change. In all reality, I do know that in five years, it will make no difference to me when I took this class vs. that, or in which semester I proposed my dissertation. I will, however, remember that when given a choice, I always prioritized optimal care over pushing through with a given plan I had become so attached to.

So, it looks like the school supplies I bought for this semester will have to wait. Maybe until next? I’m trying to be flexible with that. Until then, it looks like I have some extra time on my hands. Maybe to digest the impermanence of everything. And, oh yeah, surgery on November 11th. Unless that changes.