Category Archives: June 2013

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!

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

first swipe

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

flock of seagulls

Approaching a Flock of Seagulls-ish look here…

scared look

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

finished product

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.

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.