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.
I basically came home and immediately fell asleep. Kev went and picked up my prescriptions; he’ll tell me when I can have pain meds again. In my experience, I heal pretty quickly, so expect to be switched to just Advil by Monday. But for now, I’ll take the nice fancy meds, and drink lots of water. Not feeling up to eating yet, but I’ll try to eat at least one meal today.
Note for nurses — telling a patient repeatedly, “Don’t cry, don’t cry, there’s no need to cry” is SUPER unhelpful and kind of infuriating. Maybe she meant well, but AIGH.
I’m pretty stoic; if I’m crying in front of a stranger, there’s a problem. If you can address the problem and make it better, do that. If you can’t do anything, bring tissues.
I’m actually kind of angry too — I was cold and in pain, a combination I have a lot of trouble being tough through, and it felt like an eternity before she actually gave me the better warming blanket and more pain meds, even though I warned them beforehand that I react this way to the sedative. Same nurse I had last time, apparently. If I do this again, I’m going to request a different nurse.
I have surgery tomorrow (another reconstruction procedure, fat transfer from lower belly to breast, should be routine, not a big deal), and I am, per usual, stupidly anxious about it.
It’s weird, the bits that bug you. I heartily dislike the little IV needle they put in the back of your hand (although the actual IV fluids are great when you’re feeling yucky), which I have now had inserted many times, given pregnancies and c-sections and contrast for cancer-related MRIs etc. and so on.
And I am apparently really slow coming out from under anesthesia — I wake up super-cold and disoriented and sometimes nauseated, and it takes me a long time to get back to normal, long enough that the nurses start to get impatient at every hospital I’ve been at, and so now I kind of dread their irritation even more than how yucky I know I’ll feel.
Plus of course, there’s the fact that I opted into this. I could have just skipped it, stopped and said I was done with attempts at reconstruction, at aiming for symmetry, etc. It makes me feel dumb, that I’m putting myself through this, that I’m making Kevin wake up and go in with me at 7:45 a.m. tomorrow (I have to have someone with me, according to their requirements, or I’d probably just cab in and have him there for when I finish…), that for the next few days, I’m going to be moving slowly and not able to do much around the house.
I really wanted the house done with Christmas decorations before the surgery, so I wouldn’t be lying in bed fretting about lights needing to get up, etc., and so we did a big push and we did manage to finish today; it’s all pretty decked out.
We even trimmed the tree this evening, which Anand really wanted to do, because he says there hasn’t been enough special holiday stuff yet. So Anand had hot chocolate (which Kavi doesn’t like, oddly enough), and we cut out and baked sugar cookies in holiday shapes (mostly Kavi, since Anand quickly got bored with that part), and the kids decorated a few of them. I’d show you pictures, but I forgot to take them. They’re cute as heck. I’ve stored the rest of the baked cookies to ice next week, in preparation for our holiday party.
But even though Kevin and Kavi made the sugar cookie dough and Kev did a lot of the cutting and decorating too, so it really wasn’t that much work, I was really tired and stressed about tomorrow and I can’t say that I enjoyed any of it as much as I normally would. I was glad to spend time with the family, though. I think the kids had fun. Making happy memories, hopefully. I think I mostly managed to keep the mommy-crankiness to myself, which is something.
Heh. I didn’t really come here planning to say any of that — what I was going to say was that I appreciated having the Crisis on Earth-X superhero 4-episode crossover to distract me today, in between churning through my e-mail backlog and putting up the last decorations. It was a really fun series, with much punching of Nazis and a fabulously satisfying ending, and just what I needed to take my mind off things for a bit. Yay, superheroes. (Speaking of superheroes, the next Wild Cards book, Mississippi Roll, will be coming out December 5th in the US and Australia, a little later in the UK. I’m not in that one, but I’ll be in the one after, Low Chicago, with a story that is one of the best things I’ve written, I think.)
I should go to bed. But I can’t eat anything after midnight, so while I’m resisting the urge to stuff my face in response to that injunction, maybe I will go get myself a little spicy hot chocolate before bed. A little holiday spirit. Ho ho ho.
Talking to a fellow survivor today
about how I worked through the treatment,
kept my schedule packed. Determined to be
the best cancer patient ever. As if that were
possible, or came with a prize. Probably should
have taken more days off, but at least
it was distracting, juggling classes and kids
and chemo. No time to wallow, running
from surgery to radiation to hosting the entire
extended family for Christmas Day. Kept
my spirits up, but sometimes I fell down.
Sometimes I had to stop. Let my body
become an indentation on the couch, wait
for the strength to come back to arms
and legs. I ran and ran and ran until
I collapsed. I am not a runner but cancer
was a marathon. And the funny thing
is that treatment ended a full year ago,
and they’ve let me go back to yearly
mammograms, but I just kept running.
Resting only when I had no choice.
Breathe. This is my job now. Slow down,
enjoy the children, the partners, the body
that is creaking its way into middle-age, but
basically holds up. No need for distraction tv —
there’s nothing too frightening to look at now.
Read the difficult books. Walk in the woods
without even a camera. Write the novel.
Give over the paralysis of the last years,
the fear that this draft can’t possibly be
good enough. Write it badly. Be inefficient.
Trust that there will be time to fix it.
If there isn’t, whatever is done will be enough.
Not really. But kind of? Almost?
I was diagnosed in February 2015, and treatment ended in October 2016. When I was diagnosed, people rallied round — family, close friends, casual friends and acquaintances, strangers. I live a very public life, and one consequence was that I was lucky enough to have a ton of support, which was, frankly, priceless. Cancer would’ve been a much more miserable experience without it.
But I’ve slowly figured out something about myself in the last decades. (Maybe if I were in regular therapy I would have figured it out sooner and saved myself some grief?) When I’m having a really hard time, for whatever reason, I retreat. I turtle. I pull back from as much of the world as possible, go pretty silent about anything important, and hide until I feel better. Which can be months. And it’s not obvious to me or to others, because I have little trouble maintaining superficial connections — posting blog entries or chatting on FB. The volume might go down a bit from normal, but the normal volume is so high that people don’t notice that.
So the weird effect of it is that I’m miserable, I’m dealing with it by retreating to heal and reset, but my close friends and family don’t feel that — what they feel is that I’ve withdrawn, intensely, from them. And if they know what’s going on with me, that’s hard, because they want to be helpful. And sometimes they don’t know what’s going on with me, and that’s harder, because it probably seems inexplicable, and they often take it personally. From their point of view, I’ve pulled back specifically from them — gone silent, stopped taking phone calls, etc. It’s not so visible that I’ve pulled back from the world.
It happened a few times before cancer. The first time I can pinpoint was in a poly situation, when I was super-stressed by the relationship dynamics, and I pulled back from both of them. As she put it at the time, ‘it was as if the sun had gone out.’ The romantic relationships didn’t survive, but I’m still friends with her, thankfully. Time helps. I think another friendship ended because Kevin and I had broken up, I was shattered, but I completely failed to articulate that, and a friend thought it was a problem with how I felt about her. I’m still sad about that one, though we’ve come back to friendly, at least.
And all my close friends and family held on through the first year of cancer, but by the end of that year, cracks were starting to show. People started expressing to me that they felt unloved. Sometimes pretty forcefully, after a long time holding it in and trying to endure and wait for things to get better on their own because, y’know, cancer. When you don’t return phone calls for months on end, it hurts people.
I think social media really masked that from my end, too, because I felt like I was being super-social, spending time with all these people. The campaigning aggravated that too — I met *so* many people, cool and interesting and friendly people whom I’d like to get to know better, that my friendship buffer kind of filled up? And I somehow didn’t notice how little I was engaging with old friends and family, some of whom were going through their own hard things.
So I’m in this period right now when I’m trying to slow the hell down, and repair some relationships that were pushed to the breaking point. Stupid cancer. I can blame cancer for that, right? At least a little? It’s much easier than admitting to character flaws…
I think the relationships are mostly going to be all right, although I should still call people more often, and visit if I can. The attenuated ‘presence’ of social media has its own value, but it’s just not the same.
Two other, only sort-of related thoughts. I was noticing this past weekend (high-stress weekend) that I desperately wanted a bath. I am not actually a bath person, but when things are hard in my life, suddenly I become one — all through both pregnancies and through cancer, I was taking frequent baths. I’ve started to think of it like the canary in the coal mine — when I start taking a lot of baths, something is probably wrong, and I should slow down and try to address it.
Similarly, when I’m happy, I sing. I sing all the time, in the car, doing chores, whatever. I have a vast repertoire of show tunes, etc. When I stop singing, it’s a good sign that something is wrong, and there’s been very little singing in my life, the last three years. I’m still trying to reset after cancer, I think, come back to myself. Getting there.
Self-knowledge is hard. But valuable. Communication skills, ditto.
“Make new friends, but keep the old;
The one is silver, the other gold.”
“One breast cancer survivor has a cast in the show and also made her own artistic contribution. Mary Anne Mohanraj is an English professor at the University of Illinois Chicago, an author and a new Oak Park Public Library trustee. In February 2015, she was diagnosed by mammogram at age 43 with Stage 2 breast cancer. Although her prognosis was good, she underwent five months of chemotherapy, a lumpectomy, radiation and an additional year of follow-up infusions. During treatment, she missed little work, but ongoing fatigue from treatment negatively affected her early elementary school-age children and her writing.
“If you focus on what you lost, it’s not so helpful,” she said. “I do better when I’m communicating about it, especially to people who are going through it.”
Pressed leaves and flowers, plus lines of her poetry (“Thunderstorms, yes, the drops hammer against the windshield …”) peek through on a blue background covering her cast.
“I wrote poems during treatment, and gardening was a solace,” Mohanraj continued. “The exhibit is important because it destigmatizes something that shouldn’t have stigma — women’s health.””
It’s not really about the hair, even if reading people’s (positive) comments on my hair did end up making me cry. The hair looks fine, but it’s just not what it was before cancer. It is short now *because* of cancer, not because I chose to have it short. It’s the visible marker of everything that was lost with diagnosis.
The chunk of breast that was scooped away, the nipple that has gone entirely numb. The pain and exhaustion of chemo, surgery, radiation. The years of time that were lost to treatment (time from family, time from writing). The peace of mind and assumption of health (now every doctor’s appointment comes with added weight of anxiety). The reconstructive surgeries that are still to come.
Most days, I can count my abundance of blessings and be happy. I forget about cancer entirely for weeks on end, and feel entirely healthy. But there’s a river of loss and anger running underneath.
Not sure if that’s ever going away entirely. We’ll see.