Cancer log 203: LiveStrong

This is a paean to lackadaisical but regular exercise. So, this March, a year post-cancer treatment, I signed up for a free program at the local YMCA (funded by the Lance Armstrong foundation). I agreed to show up Mon / Wed from 6 – 7:30 for 3 months, let them run me through a mix of aerobic and weight training, and I’d get a free membership to the Y for completing the program. (This is sadly not available at all Y’s — if you’re a cancer survivor, check with your local Y if interested.)

The reason I’m posting is because I was a totally mediocre participant. I missed at least a quarter of the classes due to scheduling conflicts or winter colds. When I went, I never did more than the minimum expected, and the minimum was pretty minimal, because the class was geared towards people recovering from illness, and so it was all ‘go at your own pace,’ and ‘lift only as much as you feel like.’ It was a busy semester, I was harried and tired and cranky about going.

And nonetheless, the numbers don’t lie. My cardio capacity generally is not great, but if you look at my resting heart rate at the end of a 6-minute walking function test, it dropped from 132 to 111.

The amount I could lift with both arms and legs also increased (75 / 275 to 85 / 305).

(Sidebar: yes, my legs are freakishly strong. I attribute it to my work-study job freshman year which had me trotting up and down stairs for two hours every weekday, leaving me with calves-of-steel.)

The changes are minor, but considering that I wasn’t tracking or making any real effort to lift more than was easy to do, I’m still pretty impressed. What’s more, everyone in the class showed similar improvement, including people who were much older, much more out-of-shape, and much more recently ill than I was.

Show up, as regularly as you can manage. It matters, in exercise and elsewhere.

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Cancer log 202: Perennial Launch

Huge thanks to Garland Flowers for hosting my little garden romance launch party yesterday, for Perennial! Since the story opens in an Oak Park flower shop, it was really perfect to have our launch party there, and the owner and staff went out of their way to make it a lovely event. I commend them to you for your local floral needs!

Thanks as well to everyone who came out last night. This is a very personal little book, and the kind support of friends, family, and complete strangers — through cancer treatment, all the way up to now — means everything.

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Cancer Log 201: Capacity

It seems like I should be done keeping a cancer log at this point, years out of treatment, but I occasionally run into weird things in my brain that I think are probably related to cancer.

I’ve always said, since college anyway, that I wanted to live my life as if I could be hit by a bus tomorrow. (That prospect is a lot more terrifying now that I have children, because of what the consequences of my death would be for them.) Both then and now, I think I’ve done a pretty good job of saying yes to experiences, choosing to do and pursue the things I deeply wanted, not letting fear stop me. It’s a pretty fundamental part of my character, I think, to try to live as fully as I can.

Where that intersects with cancer, though, is I think that tendency has ramped up since the diagnosis. My first thought on diagnosis was the kids. I got the call at work, at the end of the day. I sat in my office, shaking, not feeling safe to try driving home yet, imagining what I would put in the videos I would make for them, all the mother-wisdom I would try to pack in, so they’d have it when they needed it, when I wasn’t there.

The second thought was about the books. All the books I hadn’t written. Isaac Asimov wrote over a hundred books; supposedly when he was interviewed late in life, the interviewer asked what he would do if he only had a little time left to live, and Asimov said, “Write faster.” I drove home eventually, sat next to Kevin on the couch, silently pressing my body into his, imagining all the books I wouldn’t get to write.

Then there was treatment, which took all the time and energy for a year and then some. And then I got back to writing, and since then, I have been writing and writing and starting gazillion projects and finishing some of them and not finishing others and it’s all kind of a mess right now. I hired a part-time assistant and then I hired another one (for just a few hours a week, to do different things), and slowly, I’ve been catching up on all the backlog, and getting back to writing properly again.

I’ve been running flat out, and there are days, weeks, when I wake up in the morning and I’m just going from morning to night, crash in bed, repeat the next day. I take a little NyQuil to keep me asleep most nights these days, because otherwise my brain is racing too much and I wake up over and over. That’s new since the cancer.

The good thing about hiring assistants to make time to write is that they do a lot of the household chores and SLF tasks and so I do have more time to write. But writing, it turns out, is exhausting. It is mentally and physically and sometimes emotionally draining, and if I try to do more than 3-4 hours of it a day, the writing suffers and I feel horrible.

Hiring assistants has helped me become more productive, but I am also paradoxically more tired, I guess because there was some mental rest and downtime built into the tasks that they’re doing now. I would watch tv while doing laundry, and now, I’m working in that time instead, and at the end of the day, I’m more tired than I was before.

All of this makes me a worse parent too, exhausted and too drained to want to play with the kids, and if I say, “I have to work,” to Anand one more time, I’m going to cry.

My dad worries that I work too much. I tell him I’m fine, and I am basically fine, but he’s also probably right. The urgency that is driving me to produce produce produce is also driving me to exhaustion, and I have got to figure out how to do a better job of resting.

I love my work. I love it to pieces. I am happiest when I am working to capacity, but I just can’t do that all the time, because then I fall down. I got to this convention, and I had planned to write today, but I basically checked into my hotel room, took off my pants, and climbed into bed for the rest of the day. I did a little work from bed, but just e-mail, nothing creative. The well is dry.

I need to work to capacity, but not past capacity. I need to allow time to refresh capacity. Without feeling guilty that someone else is doing my chores and I’m just…sitting there? Reading a book, taking a nap.

I’ll figure this out, but none of it is as simple as I want it to be. And I am terrified that I will fail to write my books. I wrote one book I’m really happy with, Bodies in Motion. I was satisfied by that. I managed another eventually, The Stars Change. (It’s not perfect, but it does most of what I wanted it to do.) But there are least 3-4 more books in my head that I have not managed to get out properly yet, probably more like a dozen, and it’s making me a little crazed. If the bus hits tomorrow, I’m going to be furious.

The only real solution is to get the work done, but I have GOT to pace myself.

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Shipping out signed copies of Perennial today to the ten people who pre-ordered, along with a little gift of a photo card of a flower from my garden, and a handmade fairy tale bookmark made with pressed flowers from my garden.

I just wanted to say thank you for the early support — this creative process is so unpredictable sometimes, and it’s hard to guess whether what you’re doing is anything anyone else would care about. Having people who show interest (and are willing to plonk down cold hard cash) early in the project is worth more than I can say.

So thanks to Christina, Petri, Mathew, Darrah, Caryn, Snezana, Cliff, Normandy, Amanda, & Carlos. Also thanks to those who ordered e-books; look for those in your inboxes in just a few minutes…

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Perennial Arrives!

My books are here, my books are here! Woot! They look so lovely, just as I’d pictured them. Thanks to Jenn Reese for the gorgeous cover design, and to Steve Berman at Lethe Press for the beautiful overall design (I love the matte finish, Steve!).

Thanks to Lethe as well for being willing to take a chance on such an odd little book: part garden romance, part cancer memoir, part poetry collection. And illustrated by novice artist me. It’s a very personal little book, but I hope one that many of you will enjoy.

I’ll have books available with me at PenguinCon (next weekend in Southfield, MI), at the Saturday night SLF party at WisCon (Memorial Day weekend in Madison), and at the launch party in Oak Park (June 14).

There’s a slim possibility I’ll make it to Denver ComiCon, and I should be at OutWrite in D.C. in early August, and WorldCon in San Jose in mid-August.

Otherwise, I recommend buying them directly from Lethe!

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I did the first class as part of the free LiveStrong course at the Y (for cancer survivors) this evening. (Not available at all Y’s, sorry!) It runs for several weeks, M/W, from 6 – 7:30. I am not normally an evening exerciser, but a) it’s a lot of free classes, and b) if I complete the course, I get a free Y membership. So I’m giving it a go.

I was one of the youngest people in the nine-person class, which is not surprising; I was young to get cancer too. Throughout the class, they gave two versions of the exercises — the full-out version, and the low-key version. I mostly could do the full-out one, except that my cardio capacity is still sort of pathetic. I suppose that’s why I’m exercising. I’m reasonably strong, though, so that’s nice.

The format was a couple rounds of group exercise (jumping jacks, squats, etc.), circuit training. Then 15 minutes of cardio, where you were supposed to push yourself for 12 minutes, then cool down for 3. Then some rounds of strength training on the machines, to whatever level you wanted to work at. Then some more rounds of group exercise, circuit training, but strength-focused (stiff-legged deadlifts, resistance band leg lifts, etc.). Cool-down stretches.

Some of it was almost too easy for me, and I might have to ask them to bring in heavier free weights for me. But I’ve got a ways to go on cardio. So, good overall, gets me into the gym twice a week, we’ll see where I am at the end of the program. They do assessments at beginning and end, so you can get a real sense of what it does for you.

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Perennial update

Have *finally* done the Perennial layout edits and sent the note to the layout person. I knew what I wanted done four months ago — why did I wait so long to do a five minute task? It bewilders me.
Am hoping he can turn it around quickly, and we can actually be selling the book by April. Thanks to everyone who has been so patient for so long! I do think it will be a charming little romance, a pleasure for garden lovers to enjoy, and a nice gift book for people going through cancer treatment and survivors.
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Cancer log 200: Three Years

It feels like that should be significant, that big round number. 200 entries. It’s been about three years since my initial diagnosis.
I had a follow-up with oncologist today, and she confirmed that everything looks good, and had some blood drawn to be sure the exemestane (anti-cancer-coming-back-drug) isn’t raising my cholesterol, which is apparently a thing that sometimes happens.
The everything looks good is significant, of course — she did her standard breast palpation and found nothing. Yay.
Also significant is that I forgot to be worried going in today — I was just thinking of it as routine check-up, and it wasn’t until the oncologist said, “It looks good,” that I remembered that it could have easily been not good. Three years is apparently how long I need to sort of forget that I actually had cancer. Huh.
I did also ask her if she could tell whether my cancer had been slow or fast-growing. There have been some articles I’ve run across about possible over-diagnosis of breast cancer, women going through pretty rough treatment for what would have been a very-slow-growing cancer that might never have been a problem. My doc said that yes, there’s been some discussion about that, but the issue is that you often can’t tell whether the cancer is going to be a problem or not.
Regardless, she thinks mine was fast. She pulled up the early labs and pointed to three elements that indicated that pretty strongly, and I can’t remember them all now (there was a spate of science-talk from her, because sometimes she forgets that my doctorate is not in anything that would let me understand her science-talk), though I do know one element was the fact that it was HER2+ (a hormonal thing that I used to know a fair bit about three years ago since it was critical to my getting into the clinical trial, but have now mostly forgotten).
Oh, and another element was the nuclear grading (evaluation of the size and shape of the nucleus in the tumor cells, comparing how they look compared to normal cells). My cancer was graded at 3. 3 is apparently a pretty bad grade. I can’t remember the third element at all, though. Enough all together to make her think it would be fast.
I know that it would be better, if my cancer was a slow cancer — if it came back, that’d be more likely to be slow too, I imagine. But honestly, I’m a little relieved to confirm that it was fast, because the idea of going through that whole brutal year for nothing would make me tremendously frustrated. It makes me feel better, knowing all that treatment and trauma was worthwhile and necessary.
But regardless, slow or fast, there’s no sign of any cancer in me. With any luck, the chemo and surgery and radiation got it all.
Next mammogram and doctor visit in six months. See you in September…
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Cancer log 199: Two Years

In the course of writing something else, I had reason to count up how long I’ve been cancer-free — more than two years now. Everything I’ve done since September 2015 has either been to ward off recurrence or cosmetic. At some point, I need to start thinking of myself as someone who has recovered from cancer, rather than someone in treatment.
Probably not until this last set of reconstructive incisions stops hurting, though. Ouch. Give me a few weeks.
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Cancer log 198: aromatase and fat transfer

Three hours this morning in follow-up appointments; more than anything, I continue to be irritated by how much time cancer has stolen from me. Sometimes I was able to bring a laptop and get some work done, but it’s hard to work in choppy pieces. Mostly I read or played dumb games on my phone; sometimes I just read shelter magazines from the waiting rooms. Annoying.

I started to say something about not complaining about small things, since every day without recurrence is a day to celebrate, but the loss of time isn’t a small thing, really. In the end, time is all we have. Everything else in our lives, all the pleasures and joys and sadnesses too, are composed of time. Take that away, take everything.

(As I get older, I get more and more resentful of my time being wasted or stolen, and my attention too. Cue separate rant about Facebook and the internet as a giant time-suck, about billboards and credit card ads I’m forced to listen to on planes and the spam phone calls that disrupt my day even when I don’t answer them, etc. and so on.)

But the follow-ups went well enough. The first was with my main oncologist; everything looks good, but it’s time to switch from tamoxifen to an aromatase inhibitor, since I’ve been in chemo-induced menopause now for more than a year. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

There are a host of possible side effects, hot flashes, etc., but the aromatase inhibitor has a better rate on avoiding recurrence than tamoxifen, so it seems worth trying — but only in the single digits, and there aren’t long-term studies of more than ten years yet. Hopefully I won’t get the side effects (10-30% likely, depending on which ones), but if they’re bad, I can always switch back to tamoxifen. She recommended waiting until after any holiday travel, just in case, so I’ll plan to switch just after Christmas.

I’ll also be getting a bone density scan this week, and checking my vitamin D levels, to set a baseline; one thing to be careful of is increased risk of bone thinning. Will be curious to see how my bone density is; I don’t think I’ve ever had that checked, and my mom tells me I’m developing a hunch (too many hours bent over the computer, I suspect). I try to remember to stand up and sit up straight, but I am not good at it. I would rather not get a hunch, though, or at least not for some decades to come. Forty-six seems young for it.

The oncologist asked how the fat transfers were going, and I told her that I thought this was going to be my last one. Each one (three so far) has done a good job of reducing scarring, taking the deep puckered scar from the initial lumpectomy (because the oncology surgeon was more concerned with getting the cancer out than pretty, and rightly so) to a relatively fine and unpuckered line; something I can happily live with. The actual fat transfer part, though, has been a very slow process, with each transfer only making the smallest of differences to the fullness of the breast, as much of the transferred fat gets reabsorbed by the body. And it’s really not that visible in clothes at this point, and if I look a little lopsided in a swimsuit, I can live with that. I’m irritated enough by how much muscle tone I lose from the requisite inactivity after each surgery that I am reluctant to do this again; I think I’m done. I almost didn’t do this last one, actually.

But what’s interesting is that hearing all of this, and how the reason we’re not doing a lift on the other breast to attack the symmetry problem from that side, is because my prior breast reduction means that the plastic surgeon doesn’t feel he can guarantee maintaining nerve function (he wouldn’t know what available blood flow would look like until he got in there), my oncologist said that maybe we should be following up with MRI, rather than just mammograms, because my breasts are dense (since I’m young) and complex (due to the surgeries). Heh. It amuses me, having dense, complex breasts.

I don’t love MRIs — getting the IV needle in the hand for contrast irritates me. But increased scrutiny is, I think, worth a little irritation; the one thing I want is for them to catch any recurrence as early as possible. She’s going to talk to the oncologist surgeon and get back to me; we’ll see what they say.

Then I went on to the plastic surgeon follow-up, which was relatively straightforward by contrast. He scolded me for being too active in the last week, and I refrained from telling him that if he hadn’t summarily rescheduled my surgery for three weeks later than originally planned, I wouldn’t have been trying to cook party food for 80 while only a week out from surgery.

I had lots and lots and lots of help, and I tried REALLY hard not to lift anything heavy; I even had the grocery people put my bags in the car, which I felt super-lazy to be asking for. But there was an inevitable amount of twisting at the waist while driving, stirring, etc., which is where the bulk of the fat was transferred from, and by the end of each day this past week, I admit to being in more pain than was probably ideal. (Not enough to need painkillers, though, beyond a couple Advil, so please don’t worry). The problem really is that I feel fine, and so I do things, and then it starts to hurt, but by that point, the damage has been done. I am so very bad at sitting still.

No real harm done, though, and he just said that I should try to take it easy from this point on, which is, in fact, the plan. Well, easy this week, anyway; I’m leaving for a week in Hawaii on Sunday, which will hopefully involve some mild physical activity along with the relaxing on a beach parts. He said it should be fine, as long as I don’t go too deep, as pressure changes can be an issue. I’m not doing scuba, so I’m guessing it’ll be fine.

See, I’m guessing some of you were feeling sorry for me, but now that you know I’m going to Hawaii, you’re feeling much less sorry for me, which is as it should be. It’s Jed’s and my 20th anniversary; I’ve never been there. Looking forward!

And that’s the update! Long, complicated, but basically everything is chugging along in reasonable manner. 2 years and 9 months since diagnosis, all signs good. Onwards.

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