Today I am irritated with the health care system yet again. BadgerCare has switched me to an HMO, but the HMO won’t approve any visits with the health psychologist I’ve been seeing, and I would have to switch primary care doctors and get my CT scans elsewhere to stay with them. SO. I was on the phone forever trying to switch HMOs, which I was eventually able to do, but not until March 1st, and even then I STILL won’t be able to see the health psychologist. Time to do research on sliding scale folks in town. Definitely still needing a “life coach” at this juncture.
Wish trying to be healthy wasn’t such a difficult and expensive process in this country.
Another person has been added to the Hodgkin’s club. Michael C. Hall, star of Dexter, which is incidentally one of my favorite TV shows. The news came out just recently, although he has been in treatment for awhile. This is a particularly cruel example of the disease’s randomness, since he is clearly a very fit, healthy, actor-type. He attended the Golden Globes sporting a black hat, and when I saw him I started to cry. Now, clearly I don’t know this guy; for all I know he’s a total asshole. But seeing him so visibly vulnerable made me want to run up through the television and hug him. “I understand,” I would tell him. “I understand.”
People wondered why he didn’t mention his illness during his speech, but man, I understand. It’s hard enough to talk about with one person; why does he have to share it with millions?
Exciting news: I got my first haircut today! And my first eyebrow wax! In retrospect I should have brought an envelope and saved the clippings, the way moms do when we’re babies. It’s still not quite full enough to stop wearing a hat, thanks to an unfortunate incident with my nail scissors in Mexico, but I think in a couple weeks I’ll be good to go. (Note to self: do not employ boyfriend to cut hair, regardless of any mullet-like situation.) I’m really looking forward to blending in with the rest of the world, and I am so sick of wearing a hat I don’t know if I’ll ever voluntarily wear one again. Unless, as it will be in the Twin Cities, it is very, very cold.
The other big transition of the week is that yesterday I had a small surgical procedure done to remove the port in my chest. I almost didn’t want to go through with it, afraid I would be tempting the gods, but when Dr. Chang told me I’d have to get a saline flush monthly to keep it clean, I made the appointment immediately. (Hate those flushes.)
I have a big gash and bandage on my chest and can’t lift weights for a week, but everyone keeps telling me it’s worth it. I hope so. It was kind of annoying playing in my bathing suit with this giant bulge poking out beneath my collarbone, but having to go to the hospital again was nothing short of traumatizing. I just want to be normal. That’s my mantra these days. I just. Want. To be normal.
It was, not unsurprisingly, kind of hard to come home from Mexico. For the obvious reasons, sure, like the severe lack of sunshine and warmth here, and the blessed relaxation of vacation, but also because I’ve never before taken a trip and returned to a life that no longer exists. I’m not “cancer girl” anymore, I don’t have any more chemo, I’m not at the hospital all the time — heck, I don’t have to be there till mid-March. So what do I do now? No (real) job, no house of my own, little cash, and a seven-month limbo until graduate school.
Let me be the first to say this: it’s absolutely terrifying. I don’t know what my life is supposed to look like, because I’ve never had to this before. I’ve been without cancer before (like for the first 25 years of my life), but I’ve never been in remission. The two things are very, very different. So I can’t go back to my life pre-cancer and I can’t go back to my life mid-cancer, either.
Where do I go? What do I do now? These are questions I longed to ask in the middle of my treatment, but now that I can, I feel unsure. Now the only thing limiting me is myself; I can’t use the cancer excuse anymore. But I am not quite my self yet. I am still reeling a little. I am still tired. And I am still a little lost.
I had coffee with a friend today whose own cancer journey started six years ago, and he told me: “it will be interesting to see how you change in the next year.” Because he knows what I already have a sense of: that this is just beginning. That I cannot just seal the box and put this on the shelf of memory. It’s just too big. It’s been too much.
In that sense, the point of keeping this blog is very different than it was when I first started posting on Caring Bridge. I have no medical updates to give — at least, not very often. But I am going through — emerging from — something, something that I feel is worth chronicling. It is my hope that by writing about it I can gain some new perspective on it, and I can learn to take the uncertainty and fear and transform it into something beautiful, something hopeful, something that speaks to new beginnings.