Done.

Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done. Done. Done done done done. Done done. Done. Done done done. Done done done. Done done. Done. Done done done. Done. Done. Done done done done. Done done. Done. Done done done. Done. Done. Done done. Done.

Well, kinda.

I had my last chemotherapy treatment on Thursday. My Last One. I’m trying to let that sink in, and feel the wonderfulness of it, but right now, I feel 20 weeks of chemicals and steroids coursing through my body. So while I am DONE with chemotherapy, it’s not quite done with me yet. And this last one was a doozy. If I didn’t know better, I’d think maybe they gave me a triple shot of the stuff. As it was, my doctor informed me that many people who get this treatment don’t make it through their full 12 weeks before their bodies can’t take it anymore. By week 8 or 9, they have to start trying other drugs. I can see why. It sort of feels like I got all 20 weeks, both drug combinations, in one last hurrah, just to give it that final kick. And with the last dose, I feel a return of almost all of the side effects, even those from the first eight weeks, when I was on a different drug combination: weird vision changes, heightened senses, queasiness, tingling feet, itchy hands, extreme fatigue, dehydration despite my best efforts, dizziness, agitation, inability to concentrate, extreme emotions, and other stuff I’m not recognizing because crappy is the new normal. So I can see why others don’t make it to the last dose of this combo, and I’m so thankful that I did. Because my other option was trying a new drug, and the new side effects that come along with it, instead of the ones that I know. And, worse yet, that other option meant suffering through those new side effects, knowing I’m only getting the second choice, or third choice of treatments, and worrying that it isn’t good enough, that it won’t work. I’m not sure I could have handled that.

So while I’m feeling like I’ve been hit by a semi right now, and can’t really celebrate being done, I am trying to recognize the smaller milestones that come with being done. I had my last Night Before Chemo, in which I lie awake and dread. I had my last Day of Chemo, watching the chemicals drip into my veins, noticing my body feel increasingly buzzy and poisoned and weak as the hour goes on, feeling my energy slowly drain. My last dose of steroids… ahh.. that’s a big one. I mean, literally, since I took an extra dose to help with the itching this week, but knowing it is my last? That’s a gift. So that means maybe my swelling has finally hit its peak. And my emotions can return to my regular baseline. Mostly, it means that I never again have to walk through the night after chemo, and day after that, in which I can’t sleep but am ridiculously tired. And Everything feels catastrophic and so incredibly sad. And I lash out at the people around me. And the lashing out makes me feel lonely and guilty, because I’ve pushed people away who are only wanting to be there for me, but they Just Can’t Know How This Feels. I don’t have to do that again.

And as I’m experiencing my side effects, I can tell myself that right now is the worst I’m going to feel. I haven’t been able to say that in 20 weeks. Almost 5 months. 20 weeks of always knowing I could feel worse at any time, even when worse is unimaginable. 20 weeks in which I went from wondering when it would finally sink in, when I would know what it really felt like to have cancer, to not really remembering what it’s like not to have cancer, and to wonder if I’ll ever feel healthy and energetic again. (Okay, let’s be real, I’ve never actually been known for having an abundance of energy, but it’s all relative, right?) But I can say that now. I can say that tomorrow might be better, and in a week I might feel pretty good, and in two weeks, I might be rejoicing in how normal I feel. That’s a realistic thing to say.

And just thinking that, just writing it and sharing it, that is such a gift. Such a wave of relief. I am getting myself back, starting now.

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.

Parenting daughters is a tricky business

I’ve been feeling progressively better lately. So much so that I feel like I’m waking up from a deep freeze, or a bad dream. Sometimes, I’ll forget that there are certain foods that I still can’t eat without getting horrible heartburn, but it’s nothing like it was with the previous chemo regimen. So far, I’m tolerating this current one much better. I am starting to get tingling in my feet and legs, some bone pain, and fatigue, but nothing horrible. This has me wanting to distance myself drastically from the last 10 weeks. Even if it’s just for a week or two, should new symptoms start to accumulate and put me back in bed. Because of that, I’m refusing to write about my cancer this week. It has shrunk the parameters of my world over the last four months, and as I reengage with things and people who are really important to me, I want to not think about the cancer for a bit. I even treated chemo today as a chance to sit back and listen to an audio book by David Sedaris guilt-free, while nurses fussed around me, and I pretended they were fussing about anything other than cancer.

Instead, I want to write about my favorite topic: My daughter. Yesterday was the 9-year anniversary of the day we adopted her. She is starting her last year of elementary school in a few weeks, and has firmly planted herself into tween-hood. All of this makes me reflect on her, parenting her, parenting girls, parenting tween girls. It’s a tricky business. Perhaps it’s a tricky business to parent boys as well; I don’t know, and probably never will. But as Miko grows older, I recognize in a way I only grasped intellectually before, that to successfully parent a girl in a society that undervalues her talents and intellect and overvalues her looks, is a scary and frustrating endeavor. Maybe especially for a mom who tends toward the anxious. It’s not frustrating because of Miko, mind you. Miko is this fantastic child who is wholly and uniquely, well, Miko. She’s got this way about her that shows she knows what she’s doing, even when she doesn’t. When she was 10 months old, we took our first plane trip with her. My sister said that if the plane crashed, her dad and I would probably perish on contact, while Miko would somehow survive and toddle her way back to Seattle to find family. There was something about my sister’s scenario, however hyperbolic it may have been, that rang true. No, parenting her is difficult because of all the messages she (and I) receive multiple times daily, messages for which I feel this need to maintain constant vigilance. Also, because she is adopted, meaning she was entrusted to me to raise the best way I know how. And I take that responsibility seriously. I want her to be strong and independent, but not aloof or lonely. Considerate of others, but not self-deferential. Ambitious, but not ruthless. Well-rounded. Confident. Happy. Self-aware. Secure. Capable. You know, all the things.

And largely, she is. Like I said, I have this fantastic child. But she’s at this age, this scary (but exciting and fun) transitional age, in which the opinions of and interactions with others outside of her dad and I are becoming more and more important. Maybe especially because she’s a girl, and so is socialized (and perhaps hardwired, but I don’t feel like getting into that debate here) to value the interpersonal more. So she notices when people comment first (and sometimes only) on her appearance. She hears that this is important. And the thing is, she is a particularly beautiful child. She also has this look about her that she is older, or more worldly than she really is. In truth, her favorite kind of day would consist of playing dress-up with her best friends, pretending like she’s part of the Arthurian Legend. Or doing an art project. Or cooking. Or playing mad-libs over the phone with her cousin. She still thinks boys are “gross” and “dumb,” unless they are little boys who let her boss them around. Then she thinks they are cute, endearing. She’s not particularly worldly. She’s firmly 10.

But she’s perceptive, and she notices that people find her looks to be important. This is a hard one to navigate for me. I went through a wildly awkward stage that lasted for years, and I believe I’m better for it. When she tries to elicit confirmation about her looks from me, it feels like such a complicated answer (ok, I’ll admit here that this is in part because I am, by nature, neurotic, and have this insatiable need to make everything more complicated that it really needs to be). I will tell her that yes, of course she is beautiful, but that that is the least of her many wonderful qualities. To which she usually rolls her eyes, establishing that she thinks I am so Mom. Sometimes I will tell her to never let someone try and make her looks the most important thing about her, never let them make her smaller than she really is. To which she’ll answer something like, “Mom. I’m Miko. Nobody can make me smaller.” And then I smile, and relax with it a little. A little. For a little bit.

But then we will meet someone new, and more often than not, the first thing he or she says to my daughter is something about her appearance: what she’s wearing, her face, etc. And I just want to jump in front of her and yell, “No! Ask her what she’s reading. Or better yet, what she’s writing, or creating. Because she is, every day. Ask her about her favorite hobbies, what makes her happy. Elicit her opinion on some issue going on in the world, even if you don’t think she knows anything about it. Because even if she doesn’t, you’re telling her that her opinion matters, and that it’s important to care about issues bigger than oneself. Don’t reinforce the idea that her world should rotate on how she looks to others!”

But that’s too neurotic even for me. So I don’t. Instead, I hold it in, and watch as she navigates these interactions herself, often interjecting some of these subjects on her own, without my interference. And I relax, realizing that I can worry all I want, but Miko came to me fantastic, and is going to be fantastic no matter what I do.

Still. Parenting daughters is a tricky business.

Tuesday is coming.

The purpose of discussion boards is largely to give people who need support on a given topic a community that might be hard to get otherwise. Right? This is what I’m telling myself after making the tactical error of “educating myself” by visiting discussion boards for people who are receiving the same chemotherapy regimen that I’m starting Tuesday. Tomorrow. I wasn’t comforted.

All along, I’ve been concentrating on the regimen I just finished, because that was what was at hand. This next phase I categorized in my head vaguely, as the description my doctor initially gave me: “less intense.” But as Tuesday drew closer, I started to get curious. How do people feel? Do they just feel normal? I know some people experience peripheral neuropathy, or tingling in the hands and feet, but how common is that? Do they feel anything else? Maybe I should just go online and see what other patients have to say… maybe I’ll find out most people thought it was pretty easy?

But people who are having an easy time with a treatment, or anything for that matter, don’t generally feel the need to find others in similar situations. They don’t need to reach out. They don’t have the same needs of community and commiseration. They don’t go online and say, “Hey, I’m concerned because I’m feeling so normal… anyone else out there feeling like that?” So what I found was more like worst-case scenarios. I hope. These people experienced things like chronic bone pain (both achinesss and random, shooting pains), continued hair loss (not much left to lose), constant watering of the eyes and nose, nose bleeds, fingernail and toenail loss (this really grosses me out), loss of feeling in the hands and feet, severe fatigue, general “yuckiness,” heart failure. So, not super fun. And the treatment is weekly for 12 weeks, apparently getting worse as time goes on. By then, summer is over, the weather has changed, the semester is half over. It’s a lot to think about. To worry about. To dread, causing me to see Tuesday as this scary unknown that is coming for me.

Tomorrow also would have been my brother’s 55th birthday. A big one. I was feeling really down about commemorating it by sitting in the chemo chair. Then, my clinical supervisor suggested that I think of it as honoring his memory by caring for myself, getting the treatment I need. And really, that is particularly appropriate for this regimen. One of the drugs I will be getting specifically targets the type of breast cancer I have. Apparently, my cancer makes an excess of a protein called HER2. This, in turn, makes my cancer more aggressive. The drug, Herceptin, goes after only the cells that create that protein. So it feels more strategic than the other, less discriminatory drugs I get. The ones that go after all of my cells.

So, I will take my supervisor’s advice and sit in that chair in honor of Mike tomorrow. I will hope that I will be one who doesn’t need a discussion board because my symptoms get so bad. And mostly, I will believe that the Herceptin (and the other one, the Taxol), will do everything we’re intending, and that 20 years from now when I’m thinking about Mike on his birthday, I’ll be cancer-free, with a glass of wine and not chemotherapy.

The neighbor

So, I’m pretty sure I alienated a neighbor the other day. One of the nice ones. Not that I have mean neighbors, but there are a few who are particularly nice. This one I think of as the “new neighbor,” even though I’m pretty sure she moved in about two years ago. I still have guilt for not bringing her a loaf of banana bread or something to welcome her to the neighborhood. I should probably let go of that, but it’s still what I think of when I see her, cementing her as the new neighbor. Anyway. Here’s what happened:

This last round of chemo was especially miserable. My nausea was so bad, it actually hurt. At one point, drinking water was painful. Not because of mouth sores or anything. More like, stretching my esophagus even for water was too much. To top it off, Brian had to go to Washington to pick up Miko from camp, so I was alone (save for one evening when a good friend saved the day by keeping me company). Mostly, though, I was unable to interact, or pay attention to even a book on tape, so just able to…. lie in bed. Ruminating. Feeling badly, and, quite frankly, sorry for myself. By Saturday evening I just had to get out of the house. My big plan was to go to the store and buy Pringles. Yes, Pringles. I had briefly seen some headline about Pringles contributing to cancer, and all of a sudden I had a craving. (Yes, I’m completely aware of how messed up that is. But really, I could only get about two Pringles down before getting sick, so chances are I’m no more cancer-y than before). Once I got to the store, though, it was more like a frenzy. All of a sudden, I was putting all sorts of things in my basket I’d normally never buy. (Ok, that’s a lie. I’d totally buy them, just not in front of Miko). It was my own ridiculous little rebellion against only being able to tolerate Saltines and water, and not even those sometimes. And then I added a few things like carrots and hummus to make myself feel better about it all.

Thing is, my little excursion was more than I was really up for. It had involved actually getting out of bed, getting dressed, driving to the store, and walking around for about ten minutes, and that’s more than I could handle. So by the time I got home and got out of my car, I was really ready to collapse. Cue my nice neighbor. She hailed me, asking me to wait a second while she put her dog in her yard. I swore under my breath. She bounded over in all of her non-cancer, healthy energy, her face full of concern. To be fair, she has watched me change from a normal (if a tad harried) neighbor who is in and out all of the time, to a slow-walking bald neighbor who rarely leaves the house except for semi-nightly walks in a few months, with no explanation, so I suppose she felt it was time to address it. Thing is, I was in no mood to address anything.

She immediately started in on how she could tell a lot was going on with me, and she’d like to help, do anything. A normal person would have said, “Thank you, that would be nice.” Not me. I started shooting down all of her ideas. Even when she asked what foods I could eat, I told her I couldn’t really eat anything, desperately hoping she couldn’t see into my shopping bag, willfully not acknowledging it when she did glance in the direction of the bag. I told her something like, “People want to cook for me, but it’s just too hard to find stuff I can eat.” This was a lie, really. Plenty of people have brought me wonderful meals, which I’ve enjoyed thoroughly. She asked if she could cook for my family, or babysit my kid. I deflected both. Could she walk my dog? No. In my defense, it wasn’t that I was opposed to any of her ideas. I was just so exhausted, my brain couldn’t think of the words, “All of that sounds so nice, but I’m really tired right now. Could we talk later?” It could only come up with terse rejections of her help, hoping she could go away, so I could collapse. She eventually did, and I ate my two Pringles. They weren’t worth it, by the way.

So, it looks like an awkward apology awaits me in the very near future. Perhaps it’s not too late for that banana bread, after all?

Gratitude

When I was little, I idolized my sister. What she said was law, and I followed it without question. She was self-assured, assertive, four years older than me, which gave her infinite authority, and had a unique way about her. As I grew older and able to question a little more, forging my own identity, she continued to be a strong influence on how that identity was shaped. It’s possible, though I’m not sure, that social justice would not be such a strong priority for me were I not influenced by her. This has led to a strong interest in politics, as well as a tendency to question the status quo.

Well lately, my status quo is anger and irritation, as I wrote about in my recent post about anger. It isn’t helped by the chemo making me so sun-sensitive, seriously limiting the hours I can be outdoors. Or the fact that I get these transient vision changes, making me dizzy or giving me a headache if I look at a screen or print for very long. All of this limits the activities available to me that might normally divert my attention from the normal state of affairs.

Once again, my sister to the rescue. She recently started 30 days of gratitude and exercise, in an effort to focus on the good in her life. So, I will follow her example, hopefully injecting some much needed positivity into mine. My exercise won’t look like hers, mind you. She says things like, “I ran nine miles today,” or “I took a bike ride around Vashon Island.” Mine will likely be my normal 30-minute walk, because that’s what I can do. But I’ll do it. And I’ll spend a part of each day identifying and concentrating on something for which I am grateful. Maybe I’ll post each thing on Facebook, to keep myself accountable. Maybe I won’t, because I don’t imagine it will be super interesting to others. We’ll see.

Today’s is easy. I am grateful that before entering into my fourth and reportedly most difficult round of chemotherapy yet, I got to spend a weekend with family, filling me with strength. I got to see my parents, who coddled me and had just taken Miko on a whirlwind tour of Seattle. I got to see my sister, who took time off of work to spend with me, made me laugh, and cooked me delicious treats (think profriterole stuffed with salted caramel ice cream, topped with caramel sauce and a pistachio dusting. All from scratch). And her sweet husband who might be the sweetest, most positive person I’ve ever known. I got to see my sweet nephew Scott (twice!) and his adorable boyfriend Keoni, reminding me how wonderful and interesting this next generation can be. I got to see Miko, who I’d been away from for a week, and take her to camp with her cousins. I got to see my cousins when I dropped Miko off at camp. They made me a delicious dinner and made me feel loved. I got to see a new family forming when I spent an evening with old friends, Jon and Dale, and their five-year-old son who they are currently fostering, with the plan to adopt.

All in all, it was a lovely weekend, and I came back to Missoula feeling more emotionally prepared and strengthened to enter this round. I am so grateful for that. To maintain that, I’ll follow in Chris’s footsteps once more. Thanks, Chris. I am grateful for you, too.

The Anger Post. Or maybe, An Anger Post.

I’m sick and tired of feeling sick. And tired. This makes me angry. A lot. And I realized that most of my posts have some tidbit of newfound perspective or uplifting something in them. And while those are genuine sentiments, they aren’t the whole story. If I want to be authentic to describing this experience, I also need to talk about my anger, devoid of any balancing emotion. Because lots of times, I have no balancing emotion. I’m just mad. So here’s your informed consent: if you need something happy or uplifting today, read no further. This isn’t the post for you.

I’m angry that I got this in the first place, in the time that I did. (See Mike if you aren’t familiar with the timing thing). I’m angry that it affects the relationships I have, and robs me of spending time with some of the people I care about. I’m angry that I waited out the five-year Montana Winter for Missoula’s glorious summer, only to be reduced to enjoying it vicariously through facebook and other means of visual sharing, since the chemo makes me so sun-sensitive. In my less gracious moments, I’m angry that others still get theirs, only apparently not enough to stop looking at the pictures.

I’m angry that Miko’s biggest problem this summer isn’t that her friends probably get to go to Splash Montana more than she does, or that I don’t let her have sleepovers until she has cleaned her room. Instead, it’s worry that I’ll get worse, or die like her oldest friend’s mom did a few years ago, or her uncle did a few months ago. I’m so angry she has to even think about that. And that my parents have to split their grief over losing their oldest child with worry over the life of their youngest. I repeat that anger for my sister and my other brother and my nieces and nephews and cousins and aunts and uncles and…. you get it.

I’m angry when people in the store do a double take on my bald head. The kids I try to smile at, knowing it might be shocking or even scary to them. But the adults? Come on. We all know someone who has cancer by now, due to poor health choices, bad genetics, dumb luck, or some combination thereof. Get over it, adults, and stop acting like a woman with a bald head is something to have your world rocked by. It’s not.

And about the genetics. I’m angry at this whole conversation going on about the BRCA 1 and 2 gene mutations that can dramatically increase your chances for breast cancer. This is the whole Angelina Jolie thing. She had a preventative double mastectomy because her mother died of ovarian cancer, and she tested positive for the gene mutation, putting her at an approximately 87% chance of developing breast cancer and about 50% chance of developing ovarian cancer. Her mastectomy dropped her risk of breast cancer to below five percent. She has also considered having her ovaries removed. Why am I angry about this? It’s an important conversation to have, and I’m all about having it. I also support her choice, and any other woman who makes her own personal choice thoughtfully. Just, have a full conversation. Jolie glosses over what could have been a full conversation by saying, “I don’t feel any less of a woman.” Ok, so she’s just a celebrity, I can’t really expect too much of her, since her job is to act in movies that sell. So I’m really angry at the medical community at large who don’t give women all of the facts up front, or act like other pieces of the story are important. Let me give you a little bit of context. When genetic testing was proposed to me, I was told, “If positive, some women choose to be proactive and have their breasts and ovaries removed so they can maximize the chances of being around for their families. Other women decide to wait for the cancer to come to them, and just screen more aggressively with six-month pelvic ultrasounds and breast MRIs.” Think about that wording for a minute. If I am selfless, I will put my family first, and have a good portion of what makes me physically female removed. If I am reckless, I’ll keep on top of it with imaging. Now consider if the same scenario were given to a man. What if there were a genetic mutation that put men at higher risk of developing testicular cancer (maybe there is, I didn’t check). Do you think for a moment the medical community would be so cavalier about the removal of testicles as the prudent and responsible choice? I don’t. I think there would be complete conversation, careful to consider the emotional toll of losing one’s “manhood.” So why is that dude’s manhood more important than my womanhood? Because that’s what removal of my ovaries essentially is: castration. I’m not saying anyone’s decision should be called into question, but there is value to being woman, autonomously, just as there is value to being man, and that warrants the respect of a damned discussion. (On a side note, this anger is more theoretical than actually personal. I tested negative for the BRCA 1 and 2 genetic mutation, which is wonderful news for me and my family. On a side-side-note, my options were to test positive, negative, or undetermined. I just *knew* my results would be undetermined. My immediate thought was, “Oh of course. Even my genes are going to prove to be indecisive.”).

I’m also angry for a pile of other reasons I don’t really want to talk about publicly, but still color my experience, adding to my anger, threatening to decrease my enjoyment of life.

Some of this, I know, is an expectable and rational response to a serious illness. I get it. And sometimes it’s not so rational. Like when someone tells me to have a good day, and inside I rage, “Have a good day? You f*#@ing try and have a good day feeling like this, you clueless jerk!” Instead, I smile, bottle my missplaced anger, and say something like, “Thanks, you too,” to show that I understand how to play the manners game, and that I can forgive the unsuspecting grocery store clerk who dared to wish me well.

the relativism of feeling good

In one of the classes I took on assessment, my professor started out the class by telling us that tests are dumb. Sort of an interesting way to start a semester completely on assessment, huh? So why am I taking this class if tests are so dumb? But he didn’t mean that tests are useless, he meant that any test can only tell you a very limited bit of information, without other data to give it context. So you give someone a test of depression, and find that s/he has a score of 5 out of, say, 10, well that 5 is just a number. The number becomes more meaningful when you gather more information and find out all the things that might be affecting the score, and maybe that just last month it was a 8 out of ten. Now all of a sudden, the 5 that looked moderately depressed before, now looks inidicative of someone whose mood is improving despite obstacles, or maybe due to supports. So it’s all about context, and in isolation, tests are dumb.

In my own geeky kind of way, I’m reminded of assessment a lot lately. Maybe because people are always taking their informal subjective measures of me: “How do you feel? How are you doing?” And I find that my answer generally has much less to do with how I feel that given day, but I how feel in relation to how I’ve felt in the past week. So if you ask me today, I’ll probably say that I feel great. Actually, my stomach is pretty unsettled. Maybe a 4 out of 10. I have a headache I can’t quite shake. My bones are a little achy. I had to take a short nap earlier. However, compared to the past few weeks? I’m fantastic! I was able to go into school today for a really satisfying, thought-provoking, and validating supervision session. I’m still fresh from the memories of spending several hours with some of my oldest friends/favorite people yesterday. I wasn’t in bed all day. I’m in no danger of throwing up. I haven’t had to take any medication, and I have been able to eat normal food for the past few days. So all in all, I’m great. I’m acutely aware, though, that had I felt this way six months ago, I would’ve said I feel like crap. It’s amazing how powerful comparison can be in our perception of how we feel.

The trick to enjoying these moments of improvement, though, are not spending too much thought on how transient they are. Tomorrow, I have my third round of chemotherapy. Which likely means that for the rest of this week, I will be feeling pretty poorly, by any account. But especially in comparison to how I feel today. My anxiety about the rest of the week constantly threatens to rob me of the joy of today. So my constant battle is to remember that if someone were to give me a measure of how I feel in say, two days, that measure is dumb. It only gives information as to how I feel that day. Not how long the feeling will last, or how dramatically I might improve within a week. The trick is to not get caught up in any one day of how I feel, but to let myself experience each day for what it brings, and remember that no matter what, it will change.

Before, During, After

Well, the day has come. The rite of passage, quintessential cancer patient day when I lost my hair. Ok, technically I took my hair, or more accurately, Miko took it, because of my aversion to loose hair that isn’t attached to a head, but it was imminent. Every tug at my hair took at least 10 strands, and I didn’t want to see the clumps. That’s just gross. So Brian said, “Well, do you want to wait for it to come, or do you want to take charge and do it today?” So Miko shaved my head.

I was a little emotional about it. I had butterflies in my stomach all day about it, which kinda surprised me. I mean, I don’t really consider myself a very vain person, but this was my one thing. I loved my hair. Which isn’t to say I always loved the way it looked, but that’s just operator error. Or laziness. I did love the way it could look. Like when my hairdresser does it. Or other people with patience and talent. And, most of all, I loved the color. It was different, and made me feel unique.

Yes, I’m aware I’m using the past tense. Because enough people know someone whose hair grew back differently. Maybe curly (yes, please!) or darker, or just a whole different color. Or, as my sister likes to say, a little too gleefully if I may say, gray and fuzzy. And sure, these are fixable things, especially the gray. Well, they are fixable for normal people. But I’m not a takes-a lot-of-time-on-her-appearance type of gal. I’m more of an often-forgets-to-check-herself-in-the-mirror type of gal. I can’t tell you how many times I’ve sat in a morning (okay, or afternoon) class and thought, “Did I even check my appearance today? Huh.” And when I let my hair go too long without a trim, I do this ridiculous and irrational thing in which I refuse to do anything to it. Kind of as a punishment. For my hair. Only, you know, my hair doesn’t super care what I do. So it never seems to change its behavior. Weird. So all of this is a way of saying, if it grows back gray and fuzzy, chances are, gray and fuzzy are what I’ve got. Bummer.

I’m aware most of you opened this hoping to see the goods. So here you go! From Mop-top to Cancer-chic in thirty short minutes!

This was before. I was due for a haircut, anyway. It was starting to make me mad.

Miko’s first swipe. I got a little emotional. Also, the sound of the clippers was really too much.

Approaching a Flock of Seagulls-ish look here…

I wasn’t sad here, just trying to fool Miko that I was having a change of heart. She didn’t bat an eye.

Okay, here’s what I look like bald! I have to say that this picture is a little misleading… in person my head is significantly more lumpy. That’s not just my perception. I say it’s the brains.