Category Archives: July 2013

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.