Yo-Yo Recovery

By about noon yesterday I knew something was not right with me, but I couldn't quite believe it. I had had such good energy the week I was in San Fran, but not a lot of rest. So I thought I was just a little run down. But I went for labs yesterday and my white count is low. Waiting for the other labs today to find out if I'm low on iron or B12.

What the hell?? I thought I was on the upswing. But I'm told that recovery is more of a yo-yo than a slow climb up Nob Hill (see right).

A Reply

From a friend, in reply to my query:

I think I would feel somewhat bemused and mostly cheered up. Having recently been in the position of uncovering and having to move my old journals I think I can say that I have recently found the same thing to be true. I thought I would be horrified at that girl and her emotional excesses, but I found she is still right there, and basically I am happy to have found out that I am still that girl. Or maybe I am finally learning to stop caring what other people think so much.

Walking On Thin Ice

Everybody knows this Yoko Ono song, right? Elvis Costello covered it many years ago but I cannot find that version on iTunes. I don't know the lyrics. Maybe it's not really about walking on thin ice.

But that's what I'm thinking about as I contemplate my next move in my treatment. On July 10, I went to see Dr. Popular to discuss my scans. His office had phoned me and told me they were clear, but I thought, hey, this is worth more than a phone call. Let's talk. He tells us that the CT and the MRI did not show any evidence of residual cancer and the bone scan is clean. They can see my prior surgeries and my gall stone (yes, isn't that yucky? I have a gall stone), but that's it.

Huh, I say. Okay. I guess I still go get surgery anyway. Yes, he says.

The next day we go see Dr. Solemn, the surgeon. He needs a new nickname. He comes into the examining room and he's animated, excited, bouncing off the walls. This is great! he exclaims. Your MRI is normal, your CT is not suspicious, this is all as good as possible!

Yes, but … what is YOUR deal? I'm thinking. He leaves the room so I can take my top off and my husband and I briefly confer over Solemn's new demeanor. "I guess he's just being upbeat but doesn't want to go, 'Hey! When are we doin' that mastectomy?!'" I offer, as I pull on that adorable capelet thingy. Still, we can't understand his behavior. I've got cancer, for Pete's sake.

Solemn returns eventually (he's taking and making phone calls outside the room, he's a busy guy) and examines me and tells me he feels no masses in either of my breasts. That's also great. I get dressed again, and after a while he comes back in the room. He suggests I consult immediately with the radiation oncologist. He says there's no advantage or disadvantage to doing surgery after radiation. But I could have my lumpectomy (partial mastectomy) anytime and a plastic surgeon can clean up the tissue …

Wait, we say. What? We thought we were in here to talk about my mastectomy and, well, we were gonna go all the way here and make it a bilateral (that's the term, NOT "double mastectomy") and be done. I have cancer, and I was told it was not good. I had a tumor that was over 8 cm in length, kind of a cigar shape, and I had a tiny bit of cancer in my lymph node. We talked about this in January when we first saw you, Solemn, and again in April. This is what we thought we were going to discuss today.

Whatchu talkin' bout, Willis???

Oh, you can still do that, he says. But a partial mastectomy is no better or worse than a total mastectomy. Solemn/Willis tells me my risk of local recurrence is low (4-6%) and a new recurrence in my other breast is also low. He tells me a bunch of other stuff that I stop listening to because I am stunned by this new information.

Okay, I say, cautiously, What you're saying is, I have options. Yes! You're in the best shape you can be, he says. Does this happen to a lot of people? I ask. No, he says. And then tells me to see the radiation oncologist and consult a plastic surgeon and formulate a treatment. We stumble out of the office in a daze.

The next week we meet the radiation oncologist. I need a clever nickname for him. He wears no dress shirt and tie, no jacket, no starched medical coat with his name embroidered on it. Just casual. It would be easy to mistake him for someone who just works there, not the doctor. He's kind of hilarious and quirky. He looked at my personal info, noted that I put down one or two alcoholic beverages a day as my consumption rate and winking, says, "Ah, good. You can't be an alcoholic if your doctor drinks more than you." Unlike Solemn/Willis, he prefers I get surgery first, then come to radiation. He thinks I will need 28 treatments of radiation to my lymph nodes and tumor bed. I will need 10 more treatments if, for some reason, I still do not get negative margins in my next surgery (that means: if they still find cancer cells in my excised tissue, even though I am supposed cancer-free).

Thus, the overworked thin ice metaphor. Apologies to Yoko.

Lurkers, Awake!

Okay, you lurkers, you interlopers. I'm going to ask a question, and you better answer! Either on the blog, or by email, or phone, or pen-and-parchment.

How would it make you feel if you knew (and had written proof) that the things you think about — your job, your creative life, your family, your friends, your home, your health, your travel, your WHATEVER — basically don't change? That whatever you thought or said about any of those things years ago is the same thing you would think or say now? Would you be bemused, depressed, or cheered up? What would you do with this not-new information?

Tell me, because it's important.

"You Don't Look Sick"

This is meant as a compliment. I have learned to accept it as one. I know I thought Cancer Patients were supposed to be ashen grey, swathed in a pashmina, and coughing roughly into a bandanna. I've had some hyperpigmentation in my skin, but the very thought of being wrapped up in anything heavier than a Kleenex brings on a hot flash. Other than that, yeah, I don't look sick.

I have begun to get compliments on my "haircut." My hair's light grey now, and coming in wavy. I look very punk rock. It looks bad ass. People who have known me from "before" are taken back (in a good way). Still I cannot resist telling them, "Yes, they give you this hairstyle free when you get breast cancer."

This is what I told my beloved sewing teacher, Sandra Betzina, when we met again this week at the San Francisco Sewing Experience. Sandra is one of the loveliest people I know, ever. She is so generous, not just with her considerable sewing knowledge, but with herself. "You look great, kid!" she exclaimed. We were trying on her garments, ones that she has made (or her assistant has made) from her own Vogue patterns. It lets us get a feel for how the designs fit and whether we want to attempt them or not. Sandra has a new jean jacket pattern, one that's a lot less mamaw than other designs.
She had one in a stunning dark denim, and one in olive leather. That's right, leather. You can sew that on your home sewing machine. Well, I was loving the leather one, and made a lot of jokes about how I was gonna just keep it for myself (everyone does, everyone wants Sandra's garments for themselves, they are so beautiful).

The next day she came in for class and said, "You know, I was thinking about you last night. You've had a hard year. Why don't you just take that jacket?"

So when I'm rocking that jacket in November, you will know where it came from. Membership has its privileges.

Post Chemo Wrap Up

My last chemotherapy infusion was June 11, followed by a week of the worst health I'd had since I'd started treatment. My fatigue and ennui was overwhelming, it was very shocking. I'd come home after labs on my birthday, intending to reward myself by working on sewing, but instead I plopped down and watched the The Retro Network (Rockford Files, thanks for asking).

After more Neupogen shots, my condition improved dramatically and we took a Vacation From Cancer, an Alaskan cruise. I'd never been on a cruise ship before and that was fun. The pace on a cruise is verrrrry slow and that's what we all needed. Alaskan scenery is stunning. We wore warm clothes a lot. We have a little movie of it, if you want to see it.

The week following that, I had to immediately return to The Job and get my scans — a CT, a bone scan, and a breast MRI. Here's a tip for you if you're getting a CT: if you tip your head back, back, and pour barium smoothie "shots" from a small Dixie cup down your throat, it's a lot easier to deal with (as opposed to trying to "drink" it). Also, my barium had gotten a little frosty, so it was a slushy texture — also made it easier to get down.

An MRI is a funny deal. My mother-in-law always begs us to never let anyone put her in a MRI chamber, but with a breast MRI, you're face down and can't see anything anyway. So I close my eyes and just listen to the techno sounds of the machine. I swear it's true — someone out there has probably found a groove based on the sounds of an MRI.

None of these things are painful. The worst part, including the chemo infusions, is forcing yourself to go to these places and have these things done to you. It's so strange. You are there under duress, and yet for all appearances, you are there voluntarily and happily submitting yourself to whatever is in store. It's actually your decision to be there. You can't know what this feels like until it happens to you.

Where did she go?

Long silence, yes?

Lot to catch you all up on.

For now, just know that I am in my favorite place — San Francisco — doing my favorite thing — sewing. I am in the company of new and old friends and I am very well.