Hey there,
It's been a while since my last update. I've thought about you all a lot and thought about what I could be writing to you. The idea of writing the update though, came to stand for the fact that this is still going on, that these treatments are not over yet. But alas, that is the truth. Tomorrow, I go in for chemo number five. (Should there be an exclamation mark at the end of that sentence? Should that read as an excited proclamation? Almost done! Maybe it should, and sometimes I do feel relieved that it looks like the end is in sight, but today is not a relieved day - too bad for you!)
Ok, so I'm bummed that the chemo cycle starts again tomorrow, but in reality, things have been pretty good for the last week or ten days. I've spent a couple of hours in meetings at work, hung out with an awesome horse and horsewoman at Equine Assisted Therapy (eatherapy.org), had brunches with friends, even went to see a movie. I also caught up on the phone with two long-losts I've been wishing to talk to. Even though I'm running at about half energy, and occasionally just stop everything and collapse in bed, all of this makes me think that I really could get back to "regular life" eventually.
I've been doing a lot of thinking about that concept of regular life and what it will mean, if everything goes as hoped with the chemo, to step back into my world. I can see a blurry imagination of what "regular life" looks like. Do you remember how old TVs used to go fuzzy or fill with rolling horizontal lines so you could kind of see what was happening on screen, but not clearly? If you tapped just right on the top or the side, you might be able to bring the picture back into focus and the characters would move along across the screen as they were meant to. Right now, I can only see that fuzz, those lines. The "technical tap" isn't quite working in my mind, but I hope a whole new antenna is coming soon.
In somewhat lighter news, I got some new glasses this week. That doesn't seem like such a big thing, except that they've become a kind of disguise. Since I've lost my hair and, now, most of my eyebrows and lashes, when I go out, I've come to feel sort of like an object to be assessed by people walking by. Most do the glance-and-look-away, some do the sympathetic smile, some do the full on hey-we're-both-just-people-in-the-world smile (that's my favorite). With my new glasses, which hide this eyebrow-less, ghostly blank I perceive, I blend better. I'm just a hipster with a hat on. Mwah-hah-hah! I've fooled them and feel a little more like I can move through the world like I used to. Time to get used to some big, chunky glasses for a while.
This whole idea of dressing and adorning for cancer has had me thinking. I'm calling this my rhinestone cap theory. I'm sure you've seen ladies out in the world, or maybe on tv, hairless and wearing a baseball cap bedazzled with rhinestones. I can't be the only one who's wondered why. Now, maybe these are prevalent because they are readily available at places like the cancer center at the hospital, but I think it's something else, something I've been relating to lately.
When I knew I was going to lose my hair, I was upset. Even as a woman who wore a buzz-cut by choice for much of my twenties, my hair is important to me. While I've perceived the rest of my style as understated, my hair was always my statement piece; it was meaningful, if only to me. Now it's gone and, especially after my surgery, my regular clothes weren't comfortable, so that part of my regular cultivated persona was gone too, so I went back to my early-twenties goth roots and took to wearing long, flowy, comfy, blend-into-the-background black things. That worked and I remembered why I loved that look so much back then, but I was on one of my first outings post-surgery and saw this t-shirt with a giant blue-eyed tiger on the front and said to the friend who was with me, "Every bald girl deserves a shirt with a tiger on it!" It was more than a month before I found the moxy to wear the tiger, but I was right. There is power in that flashiness!
This leads me to the rhinestone cap theory. The effects of chemotherapy make a person feel like she is literally disappearing. Weight goes, color goes, hair and people and happiness go. A person feels wasted and invisible. For me, at least, there came a breaking point where I didn't want to look sick and waif-ish anymore. I wanted to have some rhinestones on my cap! To say to the world, "Hello! Yeah, I'm sick, but I'm still here!" There's so little we have control over in this, so bring on the... well, rhinestone hats still aren't for me, but bring on the purple glasses and tiger shirts. I'm still here and maybe there is a little fun to be had in this horror after all.
This afternoon, I pick up from the airport Kristi, one of my oldest and dearest friends, for her third visit in the last three months. She'll be with me through tomorrow's treatment and the coming week. I really don't know how I'd be making it through without friends and family like her and all the others who have managed to come to stay with me (most multiple times!), or friends and family like you. There just isn't a way to thank you all enough.
All my love,
Sara