Tag Archives: breast cancer

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.

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.

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 Mothering

I’ve been trying to think of how to describe how chemo makes me feel. Mostly, when people ask, I say something like, “I’m just tired and nauseous.” And while that’s true, it’s not complete. It’s just what I say when I’m too tired to think of any other words. A more complete description would start with, “Everything feels more, bigger.”

Mostly my senses. Sounds are louder. All sounds. Which makes them annoying, and sometimes almost painful. Everything is brighter, and I feel like I’m squinting a lot to keep out the blaring light. My skin feels weird, and when I tried to clap at Miko’s end-of-the-year program, it hurt. My taste is off, and is both more intense and less pleasant. Same with smells. With these two in particular, it’s not like I taste the good things and smell the sweet smells more intensely. It’s more like the smells and tastes are more pronounced, and mostly gross. I go around saying, “Why does everything smell SO bad?” and am met with puzzled looks. All of this is very overwhelming and makes me irritable. I feel like I’m getting a glimpse into the life of someone on the Autism spectrum with sensory issues. Everything is overwhelming, and it’s all too much. One night I had the fun experience of feeling as if my senses were all mixed up; I heard the dryer spinning and became so dizzy I couldn’t walk straight.

And then there’s my brain, which is on a definite slow-down. I do things like mix up the plot lines of Game of Thrones and Merlin, a show Miko watches. They aren’t super similar. Or stop midway through a sentence because I can’t remember what I was saying. The other day, it literally took me hours of thinking that I felt like eating something bready to come up with…. toast. The confusion of my slow brain combined with the confusion of my overactive senses shortens my fuse, and makes me irritated at all people around me. Lucky them.

That leads to the mothering. The hardest part about chemo is the mothering. Not because I have a difficult child. I don’t. I have an incredible kid who makes me meals, good ones, and keeps herself busy with art projects when I am too sick to interact. But that’s the thing, the being too sick to interact. She only has one summer as a ten-year-old, and I hate to think of her spending it this way. Being patient with a sick mom, being understanding when she has to miss out an an activity because the other kid has a cold and I can’t chance it, having no immune system. And yet she does, with grace. But I see her face, when I’m short with her because she dares to act like a ten-year-old when I’m feeling especially crappy, or when plans change because I’m not able to go through with the originals. I see her disappointment when I can only make the last part of her school program. Don’t get me wrong, she has a lot of fun, too, thanks to all of the sweet others who step in. And to even more others who are conspiring to make the rest of her summer pretty fantastic. So maybe it’s more of a selfish thing that makes mothering with chemo hard. Maybe it’s not the changing of her 10-year-old summer that I’m lamenting. Maybe it’s that I only have one summer as a mother of a ten-year-old, and I feel like I’m watching it from the sidelines, only able to sometimes engage. Or worse yet, and this is hard to admit, but sometimes I feel so sick that I can barely get myself to care that I’m not engaging. And that, with the sensory overload and dull brain, makes me angry.

Round One

This is what chemo has felt like so far:

Day of 1st Chemo (I’ll call it Day 1): Mouth feels weird by the end of the treatment, can already feel the metallic taste in my mouth people talk about. I get nauseous fairly soon, but have an arsenal of drugs to deal with that. By the end of the evening, an episode of Friends is far too much for me to keep track of, and I just want to sleep.

Day 2: Between naps induced by nausea meds (which make me sleepy), I actually feel pretty good. I start plans to create an app to track everything. This will be comprehensive! It will help so many people! I will track which drugs I’m getting at which doses, what my nutritional intake is, how much I’m sleeping, how much I’m exercising, what symptoms I’m having, whatever else I’m doing for self-care, etc. This will enable me to graph my progress, and estimate what makes me feel better, and when to expect to feel worse. Why doesn’t this exist already?

Part 2 of Day 2: I’m tired. The app can wait.

Day 3: I’m not even actually sure what an app is right now. I certainly couldn’t make one. I just want to sleep. Taking Miko to her therapy appointment is the big activity of my day, and it wipes me out. Who needs graphs to map my progress, anyway? I feel like crap. Graph that.

Day 4: Feel a little better, but could sleep all day. I drag myself to the very end of Miko’s end of the year performance and try to act like I can engage in civilized discussions with others, but actually I’m just tired and emotional. And I just want my brain back, since it seems to have taken a vacation.

Day 5: Sort of like Day 4. Maybe a little less nausea. Maybe a little less tired. Still no brain function, still lots of emotion.

I’m hoping this day marks an upward swing, and I’m over the worst of this round. Because while it hasn’t been untolerable by any means, people say the effects are cumulative. Meaning, next time could be worse, and I could really use a reprieve before that happens.

Chemo

Last Thursday, I met my medical oncologist, Dr. Sarah Scott, for the first time. She is the doctor who will treat my whole body, in case any cancer spread (undetectable by imaging) to other parts of my body by giving my chemotherapy. I’m pretty sure she’s younger than me, and I spent a good portion of the appointment wondering when it was that I got old enough not only to have a specialist who is younger than me, but one who has practiced for a while. Seems like that happened awfully quickly. Oh well, she probably hasn’t perfected the art of procrastination like I have. We all have our strengths.

I was super nervous before the appointment. I knew this because I kept having imaginary arguments with her and her office staff in my head, which is something I do when I get anxious. When I recognized this and articulated why, I realized it wasn’t because I was afraid she was going to tell me she wanted me to start chemo soon, or that it was going to be difficult. Just the opposite, in fact. I was scared she was going to say that there were about 5 more things that had to happen before chemo could start, and that her office staff would contact me sometime withing the next week or so to get them started. I started practicing assertiveness skills (more imaginary arguments) to let her know I had already waited too long, and that I wanted to start ASAP.

So imagine my excitement when she told me I could start Monday. Yes, I recognize how odd it sounds to be excited to start chemo. But it has to start sometime, right? And the waiting is so anxiety-provoking for me, that there has to be some relief in the starting. There just has to be. So I jumped at the chance, before she could change her mind.

Because my cancer is aggressive, and something called HER2 positive (described here), the regimen will last for 20 weeks. For the first eight weeks, I will go into Montana Cancer Center at St. Pat’s (just blocks from my house!) every other week for 4-6 hours, and get an infusion of two drugs: Adriamycin and Cytoxan. Most likely, I will be extremely tired, and have considerable nausea, for which I just picked up a veritable pharmacy to help me manage. I may have bone pain and mouth sores. I will lose my hair in 10-14 days. At first, I wasn’t too worried about that side effect. I have always kind of wanted to shave my head, and it will grow back, so it didn’t feel like too big of a deal (although there is a flat spot on the top of my head, recently verified by a good friend, and I’m not too thrilled about advertising that). But then it hit me. Shaving my head because I want to, and shaving my head because it’s starting to fall out in clumps are two different things, separated by choice. And lately, a lot of choice has been taken from me. The choice to apply for internships this year, the choice of how to spend my summer. Choice has been replaced by loss. I’m losing my breasts, my hair, maybe my fertility. And no, I wasn’t planning on giving birth to any babies, and I’ve never really done much with my hair. But those are choices, my choices, and I like having them. So I’m sitting with those losses, and recognizing them as such. But also recognizing that those losses will eventually be replaced as well by wonderful things. Not the least of which includes my life.

After the first eight weeks of chemotherapy are over, so is the hardest part (YES!!). For the next 12 weeks, I will get another combination weekly of Taxol and Herceptin. The side effects should be less severe, and maybe even not very noticeable (fingers crossed).

Hopefully soon, I’ll see a pattern in how the chemo affects me, and can count on days of decent-feelingness. Hopefully I make good use of those days by doing something enjoyable. And hopefully, on the days I feel crappy, I don’t get bogged down with guilt or self-pity that I can’t do the fun things. That’s my goal.

Results (part two)

In my family (some of us more than others), we tend to use humor when we’re anxious. That’s not to say others find us funny, but it’s how we cope. It calms us down. If we can joke about it, it can’t have complete control over us, right? And if the humor can be morbid, all the better. (I’m mostly talking about my sister and I here, and generalizing to the whole family, but whatever). But, this doesn’t really work for a lot of other people. So when I dealt with my anxiety about getting the results from my PET scan by working into every other conversation some quip about being riddled with cancer, or something of the like, I got some unappreciative reactions. Huh.

Turns out, I’m a dirty liar. Because I’m not riddled with cancer. Almost exactly the opposite, in fact. There is a little remaining in my left breast, because my surgeon wasn’t able to get clear margins, but we already knew that. There is no evidence that it’s in any more lymph nodes, or my liver, or my brain, or my bones, or anywhere else.

So what does this mean? Well, it doesn’t mean that the cancer definitely hasn’t spread. We know there was some in the lymph nodes that she took during surgery, so it’s possible a few rogue cells went elsewhere. But it does mean that if it has spread, not very much has. So little in fact, it’s undetectable by PET/CT. So we still do the chemotherapy. That will treat my whole body, just in case. Another thing it means is that we don’t have to alter the treatment plan even more, to compensate for the more advanced disease. It means we caught it in time to have a fighting chance, before it was able to break down all of my defenses. It means I’ve never been so happy in my life to be wrong. Because the thing that was prompting my tasteless quips about being riddled with cancer was my overwhelming fear. I just knew it had spread everywhere, just like my brother. And that that news would be too much for his kids, and my parents. And Miko. And everyone else who felt my brother’s death so deeply. But I really couldn’t have been more wrong, and my results couldn’t have been better.

Most of all, what this means is that I can start chemo in the next few weeks feeling strong and confident, a little excited even to conquer this next phase. And just maybe, the people around me will be subjected to a little bit less of my morbid humor.

Hoping for the silver lining

Lately, I’ve been thinking a lot about a book I used to read to Miko when she was little. It was called Zen Shorts, and it was basically a series of Zen-inspired short stories, and an easy way to introduce philosophical questions in an accessible way for her (and maybe me). The story that stands out the most is about a man who experiences a series of events, some seemingly fortunate, and some seemingly unfortunate. After each event (I don’t remember the details, but let’s say, for example, injuring his leg), someone would invariably comment on whether said event was fortunate or unfortunate, to which he would always reply, “We’ll see.” The lesson, of course, is that even something that seems horribly tragic can end up being fortunate, if you just open your eyes. You injur your leg, so you have to miss something you’ve been looking forward to. So you stay home, and someone you haven’t seen for ages drops by unexpectedly, and you reconnect. That kind of thing. I keep thinking of this lesson, trying to remember that when I look back on all of this, I might see it through a “I didn’t know at the time that this was a good thing” kind of lens. But it’s getting harder.

I was told last week by a doctor that my cancer (he actually said cancers, since there are two tumors. I have decided that he is being awfully literal, and that’s just depressing, so will continue to refer to it in the singular) is highly aggressive, and will need to be treated accordingly. However (good news!) he also said that high-grade (scale of 1-3, the higher = more aggressive) cancer tends to respond better to chemotherapy. So, while it is more dangerous, it also may be more treatable. Unfortunately, more aggressive treatment might also mean longer treatment. So it seems as if my assumption that I could squeeze all of my treatment into this summer, and go back to normal life when school started was unrealistic. I mean, admittedly, it wasn’t an evidence-based assumption. It was a wish-based assumption, maintained by avoiding any type of research that might disconfirm it. This means that when I told him I was planning on applying to internships in the Fall, he looked at me pityingly and said, “Um, no. Probably not.” Then went on and described an average treatment process that takes the better part of a year, maybe longer, because of my aggressive cancer. I guess the good news here is that I don’t have to propose my dissertation by October 15, like I would if I were applying to internships? But really, I’d rather just do the dissertation, if I had the choice. Maybe I don’t know the good news yet. And maybe, there just isn’t any for this part.

Tomorrow, I go back to Spokane for a PET/CT. This will show us where, if anywhere, the cancer has spread to in my body. So far, every bit of testing has painted an uglier picture. I would really love for the PET/CT results to be the exception, because I’m having a really hard time believing that finding out that it has spread elsewhere could ever turn out to be a good thing. So while I am normally comforted by patterns, predictability, continuitiy, I’m really hoping for an aberration here. In a big way.

The last thing that is testing my optimism is the waiting. Waiting for results, waiting for referrals, waiting for availability. I used to think I was a patient person, but the older I get, the less I think this is true. Waiting for anything is hard, but waiting to find out something that absolutely affects the rest of my life feels like torture. The soonest appointment I could get to see a medical oncologist, the doctor who will administer and manage my chemotherapy, is May 30th. Having worked in oncology, I remember giving patients that kind of turn-around time, and not giving it a lot of thought, because it truly was the best I could offer. Now, being on the other side of the desk, knowing my cancer is aggressive, May 30th seems impossibly far away, and I am filled with regret for not offering enough empathy to all of those patients in my past. But maybe, this timing will end up being a good thing. Maybe it will give her time to read the latest research, or she will have just had a refreshing vacation. Here’s hoping for the silver lining.

Results

I can’t say this has been my favorite week. Although, I have to say, it hasn’t been all bad. Just like I say to the parents of kids with behavior problems I work with: don’t make the “bad” behavior more important than the “good,” it’s the same thing with this week. I don’t want to make the cancer bigger than all the lovely things. I’ve had more messages than I can count. I’ve had emails, facebook messages, text messages, comments on my blog, cards, letters, in-person hugs and words of support, voicemails, and phone calls. The clinic director gave me flowers at our end-of-the-year ceremony, and some sweet words of encouragement. Meals have been lovingly cooked and brought to me. Miko gives me extra kisses. Family and friends have come to appointments and surgery with me, and many others have expressed that they would. Even more have said they would be willing to help in whatever way I needed. Students have shared that they are wishing me well (directly followed by asking if they can still turn in extra credit), and so many people have expressed that they are in their thoughts/prayers/good vibes/positive energy. Classmates and faculty have supported me in so many amazing ways. It’s a little overwhelming, all this love I’ve received.

And surgery wasn’t even all that bad. The worst part was the migraine I had beforehand, probably from lack of sleep, water, food, and coffee that day. Other than that, it’s been pretty pain free, with little need for pain pills. The hospital staff was great, and my surgeon is brilliant. The tech making motorcycle noises as he pushed my wheelchair was a little annoying, but all in all, that’s not so bad. I even got to stay in a fancy-pants hotel with my sweet family, which felt luxurious.

The results I received aren’t what I was hoping for, though. For starters, all of the margins are positive. Surgical oncologists like to get a benign margin of tissue surrounding the cancer, so they can be confident they got it all. My cancer went to the end of all sides of the tissue they took out. There is also a 3 cm invasive component, meaning the cancer has left the ducts and invaded the surrounding tissue. My surgeon took five lymph nodes, two of which were positive for cancer.

So what does this mean? First, it means that the next step is meeting with a medical oncologist to talk about chemotherapy. That will happen either at the end of next week, or the beginning of the following week. Chemo can’t start until two weeks after surgery, so we have a little wiggle room. That’s because of the invasive component. Within the next week or so, I’ll also have a full body PET/CT, to determine staging (to see if it has spread to other areas). Because of the positive margins, I will have to go back to surgery after chemo is done, and have a mastectomy. Then I’ll follow that up with radiation, just to maximize my chances that every cancer cell has been reached.

So I’m not really looking forward to this summer. I’m pretty sure it won’t be my favorite. But I’m also pretty sure, if so far is any indication, that the bad parts will be tempered by the good, and my amazing support team will make it all a little better. I’m pretty sure I’ll feel loved.