come indoors

Yesterday Jason and I watched a movie where one of the characters died of cancer. This set my emotions into overdrive because my biggest struggle since getting diagnosed is my certainty that this is how I will die, and worse, that it will happen relatively early in my life.
I am two days short of my one-year anniversary of completing chemotherapy and, like I explained to Jason, I feel no comfort as the treatment recedes into the past. Instead, I feel uneasiness, like I am on a conveyor belt moving slowly closer to the ten-year mark where the data stops offering predictions about my health. That's a scary point to be headed for. And now, instead of being ten years away, it is only nine years away. I want to go back, to the security of chemotherapy, to the security of using the most aggressive tools we have to stop myself from dying. But that is impossible for two reasons: 1. Physics, 2. I'm pretty sure the doctors won't just keep giving me chemo because I'm having a hard moving on. Maybe it's worth asking? I kid.
I was explaining this to Jason and he said, quite matter-of-factly, that he believed I was looking at it incorrectly. Not as in, "You need to be more positive in your thinking," but, "Your thinking is factually misguided." The logic behind his assessment is simple: ten years of continuing treatment is enough time to find out if anything new is growing.
That makes sense. It makes perfect sense. And I'd never thought of it that way.
Naturally, the alarm system in my bran started ringing, an army of neurotic overseers, jumping up and down, waving their hands wildly overhead, screaming their protestations in desperate hopes of keeping me frightened and as such, vigilant--"But it could start growing at the 7 or 8 year mark, and then you might not know! There is never any certainty! That may not be a totally accurate interpretation of those numbers which are a report on the likelihood of recurrence within ten years of finishing chemo, and not of years eleven through forever!" But a tightness released in my chest and I thought that maybe, just maybe, Jason's logic was a perfectly reasonable one that I could get behind.
Most of the time I'm just scared to relax, as though by staying fearful I am on high alert and therefore won't let anything slip by. I realize that this is impossible, that there is even a line of reasoning that says that keeping said vigilance is stressful and filling me up with inflammation that is a boon to growing cancers. The fight or flight part of my brain is working its magic, convincing the rational bits that staying in the terrifying wilderness with the sense that the beast might always be there is better because then at least it won't be such a fucking shock. But it doesn't do any good to wait for the beast. No amount of panicked searching over my shoulder will force it to reveal itself any sooner than the medical measures already in place. I feel like my frightened, quivering self has been invited indoors, and maybe here I can sit, and breathe a little more slowly.

the worst news

When I was newer to the experience of having cancer, I wrote here that the only news worse than cancer was More Cancer. Because at that point we were dealing with finding out whether or not I had More Cancer and it seemed that my capacity to deal with the disease would dissolve if it reached a certain measurement or existed over a certain area. But then there was More Cancer and we removed it and it was awful, but it was ok, because it was better to know about it than to leave it untreated. Ironically, there was some comfort in finding More Cancer because it felt like we had found All of the Cancer, and that was good and safe.
It started to seem like the worst news wasn't More Cancer, but that everything After Cancer changes and that life becomes permeated with a brittleness I struggle to explain. Other things--like giant medical bills and the disaster with my mother and not being able to have kids and how I was woefully underprepared for the paralyzing fear and deep sadness that have filled up the spaces in my brain that were once so efficiently managing doctors and treatment--came along to occupy my thoughts. I've continued to fear More Cancer, but I always place it in the future, somewhere after that frightening data drop-off that can tell me nothing about the efficacy of my treatments after ten years. For ten years I am safe, and come 2023 I will have reached the frightening precipice of cancerous possibility. In the meantime, these other things, with their immediacy, seemed scarier because they are problems I do not know how to solve. We have means of removing More Cancer, and I can manage them with a modicum of professionalism. 
And then two moles started to change in all the ways that set alarm bells ringing. One of them, once round, smooth, and a dark chocolate brown began to leak color into the pale surrounding skin, like a sponge dampening a towel on which it has been set. The smooth, small protrusion of it became bumpy and black. The other turned from a petite dark brown spot to a red-brown speck with a blurry tan border. I'd been trying not to be alarmed, to just pay attention to the changes so that I could talk to my primary care doctor about them at my upcoming appointment.
And then the larger, darker one fell off. I was looking at it after a shower to monitor changes when I touched it lightly to see if it still felt bumpy and at barely being grazed, it fell off. This is not a good sign. It also possibly a sign of nothing, but all of these things are also signs of Something.
I go to see the primary care doctor tomorrow. I don't know if he's planning on doing an excision so we can get these things biopsied (which is my hope), or if he's just going to look at them and set up another appointment for excision. But I'm getting more biopsies either way. Because we're looking for More Cancer.
I was right the first time, about the worst news.

***Update: It seems that all my worry was likely (thankfully!) for naught. I had both moles removed today and my doctor says that he is 99.9% sure they are nothing. You may have noticed that I was freaking out a little bit about that.

more hard parts

I couldn't have picked more perfectly uncomfortable radio program topics if I'd been sitting at a table writing this morning with a team of gifted screenwriters instead of living it. As it happens, I was living it and not writing it, though I wish it could have been the other way around.
On the way to my mother's appointment with the orthopedic surgeon, Diane Rhem interviewed two men about the new pope's views on abortion and family planning and poverty. We drove in silence, each pretending to ignore the broadcast, each pretending that she wasn't judging me and that I, in turn, wasn't angry with her for that judgement. As if she has any idea of what it was like...
She spent the hour or so at the doctor's office being impossibly chipper, cracking jokes and insisting that I could leave if I wanted to. I maintained civility. I'm not ready to be her friend yet, not without some sort of coming to terms with the past year and half.
We waited at the check out counter. She nervously eyed an elderly couple, leaned toward me and whispered loudly, "I don't want to get old."
"I don't know what to tell you." All I could think was how much I hope that I can get old, and how old she is in spite of her age.
At our next stop, she lost patience with my inability to play at being friends and yelled at me as I tried to help her into the store.
She came out--stubbornly pulling herself along with one functional foot, three bottles of wine in plastic bags on her lap, crutches held awkwardly at her side--and ignored me when I tried to help her into the car.
On our way back to the apartment, Terry Gross interviewed the makers of a new television series about adults with elderly parents receiving palliative care. They talked about the burden and the privilege of being there for the awful time our loved ones spend in the hospital. about being advocates and caretakers. about love.
And while she stared out the window brooding, I snapped.
I told her that she didn't get to punish me for having a hard time with this. I reminded her that she had lied to me and said she was dying, that she had been vicious while I was sick and scared for my life, that she had concocted strange stories about me and Jason as though I might somehow come to believe a fiction about my own actions. "But I'm here," I said, "taking you where you need to go and walking your dogs, and I'll keep doing it, but you do not get to demand that I not feel what I'm feeling." She turned back to the window, silent. I cried.
Wordlessly, she refused my help out of the car or up the stairs where she slammed the door in my face.
It's hard to know what to do next, if anything.
Cue Lynn Rosetto Kasper's explanation of the best holiday recipes for eating away your guilt and sorrow.


 

bright spots and dark spots

I haven't used the space to write about my mother. I think because, on some level, her big-brotheresque stories about being able to constantly monitor me still linger in the back of my mind and I think she'll find it. I don't think I've got any readers who don't know me, and if you know me, you probably know that she and I have a horrible relationship. You probably also know that we haven't actually spoken to each other in over a hear. I use that term, "speaking," fairly liberally, because since I told her that I wouldn't talk to her until she stopped screaming at me (for not appropriately assuaging her fears that I might die while I was dealing with my diagnosis and subsequent surgery and adjuvant therapy planning), she hasn't actually spoken words to me, but has screamed via text message about how she's dying (not true) and how I am a terrible person for abandoning her.
Sometimes I think she's right. Most of the time I appreciate the quiet weeks in between the texts.
She is not well. I know that. But I couldn't keep letting that be my primary concern in life once I ran into something so large that it took all of my focus and strength. I needed to take care of myself before I could take care of her.
A week ago she broke her ankle.
I picked her up from the hospital and took her home and have been stopping by every day to walk her dogs.
It's awful.
At first she was terse, resentful of needing my help, I'm sure. She's moved on to pretending that nothing is wrong, ignoring me or playing dumb or tossing out trump cards when I indicate that I, too, know what it's like to be incapacitated by surgery. To feel frustrated and gloomy and scared. To be in pain that seems like it might never end. To be dependent.
She wasn't there for me in those days. Indeed, two days after getting home from two surgeries and a week in the hospital, she picked a fight with me that led to the ensuing year and half of (relative) silence. 
So she pretends that those days never existed, or that if they did, I am just melodramatic, exaggerating for pity, which lets her be the bigger victim.
And I keep going over there. Keep biting my tongue. Keep not screaming at her for accusing me of shaving my head after finishing chemo to garner more sympathy. And not confronting her about how she lied and told me she had lung cancer, or about how she tried to make me think that Jason was cheating on me.
And I spend a little part of each day feeling like I might explode. And I don't know what to do.
I keep thinking that there ought to be a point when shit stops piling up. I can't be the case that all of my life will be this perpetual onslaught of disasters, right? But it doesn't ever seem to stop and I'm just so fucking tired.
I suppose in these dark moments, it is easy to overlook the bright ones that come in between, and there certainly are bright spots.

sweet relief

This thing I've been waiting for for over a year finally happened. It happened and I didn't even notice, but I suppose that's exactly how monumental events of this variety ought to happen.
I went the entire day--from the time I got up and get dressed, through my work day of moving around and crouching and huddling with students over their writing, of putting on taking off my jacket, until I got home and had made dinner--without thinking about my breasts. At no point did I have to try to discretely adjust my prosthesis, pull my scarf lower, my sweater tighter, or my collar higher to hide the awkward, abrupt protrusion that housed the hard, bulbous tissue expander. When I used the bathroom I didn't bother looking at my chest to see if the prosthesis was lopsided or if my bra was fitted weirdly over the expander (where I lack sensation). No stretch was interrupted with the genuine fear that I'd disordered my cumbersome, temporary breasts. The expander didn't push into my bicep, nudging uncomfortably to remind me of its presence.
I just got up and went to work and did regular people things, and thought about regular people things, without being distracted by feeling like a very irregular person. I haven't done that in a very long time.

surgery

Yesterday I had a surgery. The awkward, hard tissue expander that had been in place for months was removed in replaced with a much more breast-like implant.

The tissue expander was an odd, plastic pouch inserted under the muscle at my mastectomy site, slowly inflated by shots into the hard port. It crinkled and made a hollow sound with a strange rippling reverberation against my ribs when I bumped it . As it grew, it was stretched to beyond the size of my natural breast, expanding in an unnatural, somewhat cylindrical protrusion on my chest. It stuck out a bit past my rib cage so that every time I loved my arm, I brushed against it. It was difficult to dress, in its last expansion phase necessitating that I wear my prosthetic breast over top of my natural breast to compensate for the extreme size difference.

Now it is gone, and in its wake is a body that will soon feel much more normal, much less like a construction site, easier to dress, comfortable.

This is an important part of my new normal.

staying, from this end

I've had a lot of people remind me, as though left to my own devices I'd forget, that I'm lucky to have Jason. I know it, and I say it a lot, too. He's good support. He makes me laugh. He makes me feel smart and important. But that's not what they mean, and sometimes it's not what I mean either.

What we all collectively mean, at least sometimes, when we say this is that I'm lucky that he stayed.

I don't know that he even knows the extent of it, but doctors and nurses asked regularly how he was coping and how his coping was affecting me. They were always relieved to hear that I wasn't afraid he'd leave, which is so heartbreaking. Even the women who fitted me for my prosthesis kept reminding me that my husband was going to be so happy. They were wrong about that. He wasn't the one who cared.

It does not say good things about what we expect from men that so many people approach his having stayed with such gratitude and surprise. It insults Jason. It indicates that abandonment is a common experience for a lot of women, so say the nurses, doctors, and prosthesis fitters, most common for women with breast cancer.

On another level, it does terrible things to me. Because I already fell apart about what a burden it was. Because on some level I do not believe that I'm worth the trouble. Because there were times when I wished he would leave me so that he could have the sort of life I wanted him to have. The one he wanted. The one we planned. Because I sat sobbing more times than I can count, cursing the fact that the insurance came through his job, because if it didn't I could have just left, given that he showed no signs of being willing to pick a different life for himself. Because if we all think it's remarkable that he stuck by me, then don't we all think, just a little, that he would have preferred not to? Because if we think that, then aren't we all agreeing that I'm really not worth the trouble?

Because I already feel so fucking lucky and indebted that I'm struggling to consider myself his equal.

So I'm glad that my family is completely head over heels for him. And I'm glad that the people who ask have a positive story to file alongside their collection of bad ones: The Good Man Who Stayed. And I'm glad that on some level I know that he was never going anywhere. What I don't always know is why it was worth staying. But I don't think I can handle another reminder of how lucky I am. But I could take a few that this--that staying--was exactly what we all thought would happen. That it is worthwhile. Because that's the thing I still struggle to believe.